Living with Chronic Idiopathic Urticaria

Monday, October 5, 2009

If you have Chronic Idiopathic Urticaria, I doubt I have to explain what it is, or you wouldn’t be searching the internet for relief. There are links galore on symptoms and possible causes, but idiopathic means the cause is unknown and so is the cure. I don’t know my “triggers.” I don’t think there are any. 99% of all urticaria is auto-immune related and unrelated to an allergy, but I do know that Aspirin, Ibuprofen, or Naproxen is like throwing gasoline on a fire for me. Steroids are NOT a long term solution. If you’re on them, talk to your doctor and get off them ASAP. They can do more damage than they can help. I have read several articles that cite studies saying that the anxiety experienced by chronic idiopathic urticaria is similar to patients recovering from triple heart bypass surgery. I believe it. I don’t like writing about this. It’s embarrassing and extremely frustrating. Even more frustrating is trying to find relief.

I’ve read a lot of people describe their misery with this ailment but very few people talk about what helps them manage it or even overcome it. If you’re like me, your doctors help you manage it with medication and lifestyle choices. I’m not going to write about a magic cure, but I do want to let you know about what is finally stabilizing it for me after dealing with this for over a year now. NO, there’s nothing for sale. NO email list to join. This advice is FREE. NO tricks, unlike all the other sites I’ve gone through on the net. Please note: what works for me may not work for you, and of course you should consult your doctor before taking any medication.

Xyzal (levocertirizine)

I can’t imagine you’ve had chronic urticaria long without discovering Xyzal. If you haven’t already tried it, ask your doctor about it a.s.a.p. It works wonders, but it costs about $3.33/day. I’ve yet to hear of an insurance company that will cover it. They will tell you the same thing as your pharmacist, “Take Zyrtec it does the same thing.” As I told my pharmacy, “If it DID the same thing, I wouldn’t be paying $3.33/pill for Xyzal, now would I?!”

As I understand it Xyzal binds to histamine receptors better than Zyrtec and is released differently over time. I don’t really care. I just know it works. One pill in the morning. That’s it. But if you’re like me, you get tired of taking a $3.33 pill every morning after a year, so you look for other options. You’re only treating the symptoms with prescriptions. They are not a cure! My allergist jokes that “the only side-effect of Xyzal is poverty.”

You may already know that a generic version of Xyzal is not available in the United States, although it’s been sold safely in Europe and Southeast Asia for years. I recently ordered the generic, levocertirizine, from a Canadian pharmacy. Two weeks later, I can’t tell a difference, and I got a 3 month supply for $55.00. That works out to $0.55 a pill. So, I’m on the cheaper generic till I can wean myself off completely one day.

Zantac (ranitidine)

It’s an over the counter acid reducer, but it’s actually a type of anti-histamine. For whatever reason, taken together with Xyzal and Zyrtec it does help them work better. I’m down to one in the morning and sometimes a second one in the evening.

Zyrtec (cetirizine)

This stuff has worked great on my seasonal allergies for years and the generic stuff is just as good. However, taken by itself it just doesn’t work on Urticaria. I don’t care what my pharmacist says. I do take it in the evening rather than taking a second Xyzal which is expensive.

Hydroxyzine

This is the only anti-histamine I take that makes me sleepy, so I only take it at night as needed when the other meds just aren’t getting the job done. However, I haven’t taken it over three weeks now, ever since I started taking the vitamins & supplements below. That’s it for the prescription meds.

 

Google and read up on the benefits of these vitamins & supplements. I’m not going to repeat the info here. I discovered these by looking for those that reduce inflammation and boost a healthy immune system naturally. Other people have talked about the results they had by taking these and some have even gotten off their prescriptions.


Multi-vitamin.
I take a generic similar to Centrum.

Vitamin CEven though there is some Vitamin C in the multi-vitamin, it’s not enough. This boosts your immune system among a whole lot of other benefits.

Vitamin D. Again, the multi-vitamin is not enough, only 400 iu. I take an extra 3,000 iu daily. This is great for reducing inflammation, boosting your digestive system, and whole bunch of other things. Sunshine is a natural source of huge doses of Vitamin D. Try to get some if your CIU isn’t triggered by heat or light.

Omega-3 Fatty Acids. I take a 1760 mg Fish Oil Omega-3 supplement twice a day. Omega-3 might be the single most important supplement than any American could take. The list of benefits is huge. Most importantly it fuels the body’s anti-inflammatory response. Omega-6 fuels the inflammatory response. Most Americans typically have 16 times too much Omega-6 in their system. You need a healthy balance of both. You can also get it from eating fish, flax seed, almonds, or walnuts. The biggest difference I’ve noticed after taking it for just a few weeks is that it has greatly improved my mood. It’s a natural anti-depressant and has also been shown in studies to deter MS and Alzheimer’s. The recommended supplement amount is 3000 mg a day.

Apple Cider Vinegar. I read about this supplement from another urticaria sufferer who swears by it. I take the tablet supplement instead of the liquid diluted with water. (If you do take the liquid, dilute it. It’s an acid and can’t ruin your teeth and burn your throat.) The tablet also has another supplements like Cayenne, Ginger Root, Iodine, etc.

So, that’s the concoction of scripts and supplements I’m on. After a few weeks, I’ve already cut out the hydroxyzine. I’m about to stop the Zyrtec. If I’m still feeling as good as I do now, I’m going to drop off the Zantac taking only the Xyzal once in the morning, until I try alternating days and eventually off all the scripts completely. Most people say it takes about 3 months of the vitamin/supplement regime to really reap the full benefits. I’ll add comments to this post later to update it.

However, the most important factor that inflames the urticaria by far without a doubt is… drumroll please… STRESS!

Stress

Stress is a difficult and dangerous cycle in dealing with chronic urticaria in particular. Stress makes it worse, but flare ups also cause a high level of stress. If you’re like me, you have to stay on top of your meds and avoid triggers, because once you break out, it’s very hard to stop it and get it back under control. There are not enough pills in the world to help Americans manage stress and no pill as effective as lifestyle changes and choices in helping to manage it naturally. Figure out what makes you tick, what stresses you, and do something about it. Do whatever works for you. Keep trying until you find it. Walk in the park, listen to music, try yoga, take a long hot bath, whatever works for you.

For me I haven’t found anything as helpful on so many levels or nearly as effective as meditation. Even before beginning the vitamin/supplement regime, during one particularly bad flare up a couple months ago, I spent almost an hour in meditation one night. I went to bed and woke up the next morning completely normal, although it was without a doubt the worst flare up I’ve had in over a year. Change the “C” in your mediCation to a “T” as in mediTation. It will make all the difference!

Please comment and share what works for you!

101 Comments

  1. Lyndon says:

    Wanda, your situation sounds familiar. I have never read or heard that you can’t take Xyzal and Zantac together. In fact, my allergist said that Zantac has been shown to increase the effectiveness of Xyzal alone.

    Since I posted this 25 days ago, I am doing much much better. I’m completely off night time meds: Benadryl, Zyrtec, and Hydroxyzine. I’m also off the Zantac I took morning and evening.

    All I’m taking right now is one generic Xyzal in the morning with, Centrum, Vitamin C & D, Omega-3 1760mg, and two Apple Cider Vinegar supplements. I take a second Omega-3 1760mg in the evening.

    I’ve been doing so well, I’m about to starting skipping doses to see if I can manage it with supplements alone.I read an article from a lady in the U.K. who takes this regimine of vitamins/supplements. After 3 months she was completely off meds and had no symptoms.I highly recommend you try them if nothing else is working.

  2. Margo says:

    Thanks for sharing what works for you. I am trying your regimen, after having just returned from the Dr. for the second time this week due to a horrendous outbreak with itching that just will not stop. I am taking prednisone tablets right now because that has worked in the past to relieve swelling and get rid of the hives, and I am also incorporating your suggestions–went out last night and got vitamin D, C, Omega-3, everything you suggested except the apple cider vinegar–couldn’t find that in a tablet, so am going to try a specialty shop today. I have a whole boxfull of Xyzal samples from my allergist–I feel so lucky to have them after reading how expensive they are! Mine are 5mg tablets–is that the strength you take? The dr. also had given me Hydroxyzine to take at night for the itching, but it doesn’t seem to help with itching nor does it make me sleepy, but I will continue to try it.
    Thanks so much for posting all this great information. How are you doing now? Please give an update if you have time.

    1. Lyndon says:

      I took a LOT of prednisone for a while. When my allergist found out how much my FP & dermatologist gave me, he got me off them right away. They really are not good for you long term. They really are best just to get a handle on a bad outbreak and give the antihistamines time to start working.

      Some people take the apple cider vinegar in liquid form diluted with water. I’d rather the convenience of the tablets. I highly recommend getting the generic Xyzal from a Canadian pharmacy. It has saved me so much money and work just as good as Xyzal. I’m off the Hydroxyzine completely. It never made me that sleepy either but it did help whenever I was having a bad flare up to get things under control again. If you’re not seeing a difference, I would switch to taking a generic Zyrtec at night and the Xyzal in the morning. My allergist recommended that for me to keep from taking a second expensive Xyzal at night.

      I’m doing great. No outbreaks at all since I started this vitamin/supplement regimine. (Knock on wood). I am down to one Xyzal in the morning with my vitamins/supplements. That’s it. I don’t want to get off the Xyzal completely because it helps so much with my normal allergies. I haven’t had a sinus or ear infection in over a year since I started taking it, and I have had chronic severe ear infections all my life.

      I haven’t tried to take aspirin, ibuprofen, or naproxen again. I’m not allergic to them, but since I developed urticaria they are like throwing gas on a fire for me. It’s made dealing with arthritis a bit uncomfortable without them, but the Omega-3 is supposed to enhance your body’s natural anti-inflammatory response.

      This isn’t a miracle cure. I just think if you give your body enough of the right things over time, it gets your body out of a hyper-allergic state and builds up your immune system to heal naturally. At least that’s the rationale given by the lady who shared this treatment with me. I don’t care. It’s healthy, non-toxic, and it works! What else do we need to know? Best of luck!

  3. mary says:

    Hi there. I have had (mild) dermographic urticaria for over 8 months now. It started with a course of antibiotics but even when I stopped, the urticaria didnt go away. I am currently on a no-yeast no-sugar diet, but its not helping much.
    I also wondered whether there might be a link with
    my root canal treatment. I had a root canal treatment when I was a child, then had an apisectomy because of infection, and then another root canal treatment 3 years ago. My root is a bid damaged and I wondered whether I might have become allergic to the substance they use for the root canal filling?
    How can I find out, the dentists dont know anything and the Xray doesnt show any infection … I’m really frustrated 🙁
    Thanks for any suggestions, or similar stories.
    Mx

    1. Lyndon says:

      I’ve read about both celiac disease (allergy to glutens) and root canal issues as possible causes for urticaria. None of the symptoms of celiac disease seemed to fit me except for hives. I’ve eaten gluten foods all my life with no problem. It just seemed unlikely that it was my problem. I also wondered about tooth fillings because I have several amalgam fillings. I read that some people developed mercury poisoning as a result of their fillings, which in turn led to urticaria. Some people have had their fillings replaced and said they were cured afterwards. My fillings are not that old and most of the other symptoms just didn’t sound right.

      My allergist and most people I’ve read say that you could spend the rest of your life trying to find a cause or trigger and never find one. That’s why its called idiopathic. I’d rather spend time finding what works. If natural vitamins/supplements help build up my bodies natural anti-inflammatory response and a healthy immune system, I’m all for letting nature do its thing. Best of luck to you!

      1. Ellen Marian says:

        Please tell me what vitamin regime you use daily for your urticaris. I have been diagnosed 3-4 mos ago and am still doing 19 mg of steroids daily. The disease is scarey and horrible. Thanks in advance for any help! I know it is different for each person.

  4. Stina says:

    Hi!
    Just want to say thank you for posting this info – I’ve heard in other places that theses vitamins should be beneficial and will start taking them tonight! I have had urticaria in my face, around my eyes and on my neck for about a year and a half, and it is truly depressing and ruining my life to some extent. It is kind of comforting in a way to hear that there are others out there with this weird problem!

    Just want to say also that meditation works for me too! It is as if it calms down a system that is in hyper mood….
    I will also post any changes I might see after having taking the vitamins. it would also be great to hear more stories about people trying this or something else that work for them.
    Best of luck to all of you!

  5. Lyndon says:

    Well, I had a headache and thought I would take an aspirin just to see if I was done with this. Being cautious I only took one. Later that night I could tell symptoms coming on and started taking meds. The next day wasn’t too bad but took a second dose of anithistamines that night. Today, day 2, I’m breaking out again. So it appears I had it under control with 1 Xyzal a day and supplments only but sort of a fine wire balancing act I suppose. Now I know. I just won’t take aspirin and stick with my vitamins. Proving that it may be something we live with but never really cure.

  6. Cristy says:

    Hi,
    I have been suffering from a rash since Sept or Oct that my allergist now has told me she thinks is Urticaria. It gets on my back, chest, shoulders, neck, & face. So frustrating! None of these dr’s no what or why. I have been to my primary care dr, dermatologist where she did a full blood work up and punch biospy, and now being treated by an allergist. I have been on prednisone (temp works), antiinflammatories, clarinex, and now Hydroxyzine 3-4 daily which makes me extremely sleepy. It comes right back as soon as the steroids are finished. I am all for trying the vitamins/supplements! My question is the Urticaria is pustule like in some areas and pictures I have seen all look like just hives….is any one else’s small pustule like? My allergiest tells me there are two types…but she doesn’t really know what I have or am even allergic too…???

  7. Lyndon says:

    Christy, I’m not familiar with a pustule form of Urticaria. I would switch the Clarinex for Zyrtec immediately. Clarinex hasn’t been shown to have much effect on urticaria. Zyrtec works well for some people. It helps me, but doesn’t work as well as Xyzal, a different form of Zyrtec. You should try the Zyrtec OTC and ask your doctor to put you on Xyzal, one a day in the morning. I took a Zyrtec in the evening as needed, and 2 Hydroxyzine at night before bed only if needed. Xyzal & Zyrtec are non-drowsy. Being on that many steroids for long periods of time is not good at all. You should get off them as soon as possible. I couldn’t imagine not taking them at first either, because they were the only thing that worked until I found Xyzal. You really shouldn’t stress yourself out more by trying to find an allergic trigger. You probably never will. If your urticaria is autoimmune related like most of us, your body is allergic to itself. There are other things that just make it worse and inflame the problem like heat or stress. One other thing, anti-inflammatories like Ibuprofen (Advil) or Naproxen (Aleve) make my uritcaria flare up severely, although I’ve taken both all my life until now. You may try getting off them for a couple weeks too to see what difference it makes. Best of luck to you! I’m no doctor but this is what’s working for me. Ask your doctor or find another one.

  8. Rex says:

    I’ve been experiencing the same symptoms, frustrations, and symptomatic solutions for over 10 years. I recently changed from Zyrtec to Xyzal and immediately noticed a signficant decrease in symptoms. I’m interested in more information about drug interactions between Zyrtec/Xyzal and anti-inflammatories. Namely, does taking an anti-inflammatory reduce the effectiveness of Zyrtec and/or Xyzal? I notice that when I take Motrin and Zyrtec my urticaria remains a problem. Not so with Xyzal. Years ago I recall a note in the documentation included with Zyrtec that warned of this decrease in effectiveness when taken with anti-inflammatories, but I’ve been unable to find it recently (online or otherwise). Have you been able to find an official documentation on this interaction?

    Thanks
    Rex

    1. Lyndon says:

      Sorry, I haven’t heard of an interaction between anti-inflammatories and Zyrtec or Xyzal. In my case anti-inflammatories like Ibuprofen, Naproxen, or even Aspirin cause a reaction in me. They aren’t necessarily a trigger for me, but my allergist says its like throwing gasoline on a fire that make the symptoms much worse. I’ve taken them all my life with no side effects but have resolved to live without them. Natural anti-flammatories like Omega-3 have been helpful instead. Best of luck, Rex.

      1. L Horne says:

        I had suffered for 10 years on and off with bouts ciu. After many medications and different combos I found the xyzal Zyrtec combo works the best for me. Three years ago I was able to completely wean myself off of all antihistamines by making some dietary changes (eliminating inflammatory foods) and adding supplements. I spent about 6 months under the care of a kinesiologist who helped me figure out which supplements my body responded to the best. For me, I needed a massive daily dose of vitamin c to keep the hives under control. I started with a vitamin c flush to determine how much my body needed. At first it was 10 grams of buffered vitamin c powder daily. That went down to 4-6 grams per day after my body adjusted. This has kept me healthy and off meds for 3 years with no hives! I am so grateful my Kinesiologist helped me figure out what my body needed. I would have done anything to know how to make it stop!

  9. Jacinta says:

    I have been suffering from chronic hives for 2 years now. It was triggered by serious sunburn to my whole body. No antihistamines completely stopped it and I became immune to them after a while anyway. And I was taking double the recommended daily dose! Well, after doing my own research, I decided to try to vitamin C powder in high doses. I will try anything because I am desperate, and it actually works!!

    Anyone with hives should DEFINITELY try this… please. And then can you let me know if you have any success with it. You have nothing to lose and it must be much better for you than taking all those tablets. We need to spread the word too because more research needs to be done on this 🙂 Mine was quite a severe case. I really feel for anyone suffering from this because it is very very frustrating and annoying explaining it to people. Good luck everyone.

  10. Jacinta says:

    Please try 2g vitamin C powder a day. Read my post below. I have managed to stop taking all the antihistmines… It worked for me.

  11. Mary says:

    PLEASE READ THIS – I THINK I HAVE CURED MY CHRONIC IDEOPATHIC URTICARIA
    I used to eat sweets everday – cookies, chocolate, cake, etc. Doctors told me to live on Zyrtec, which works great, but I want a cure, not something to cover the symptoms. I happened upon an article about things in our diets causing inflammation. DUH!@#$ So I started an “anti-inflammatory diet.” Look it up. After one week, I really think it is almost gone. Pacific salmon (not farm raised), oatmeal, almonds, flaxseed, walnuts, berries, sweet potatoes, green tea, and 4-8 glasses of water a day. My diet did not consist of just these items, but I ate a serving of at least 2 of these a day. What a difference! Look it up – I hope it helps.

    1. Lyndon says:

      That makes a lot of sense, Mary. Those are foods rich in Omega-3 plus lots of other good stuff. Will definately give it a try.

  12. Helen says:

    My Chronic urticaria started as a reaction to the drug Effexor. That was in August 2009. I still have hives every day all over my body, except my face. I suffer also from psoriasis since 2007, brought on by a period of intense stress. I’m an itchy mess. I’ve been to my primary care physician, an allergist, and a dermatologist. I’m taking Zyrtec, Claritin, and Hydroxizine with very minor relief. It’s worst at night. I’m so depressed and stressed over this that I’m making it worse. I’ve done 5 sessions of acupuncture, weekly Kundalini yoga, and am taking a Chinese herb blend called Derma Wind Release by Kan. NOTHING IS HELPING. I have an appointment in March with an immunologist who had “chronic hives” in her services description. My mental state is pretty bad because I’ve always been an attractive woman, placing too much emphasis on my looks for my well being, and now that my skin is so unsightly I cry every day. This is taking a huge toll on myself and my family.

  13. Stina says:

    Hi Helen, Just wanted to give my sympathy, and telling you that you’re not alone – I used to work as a fashion model before all this happened to me, and now I have had two years of cronic urticaria in my face, neck and now also sometimes on my body – I know it is terrible, and devastating for oneself and the people around you.
    Before this i used to do yoga every day for about an hour every morning, including meditation, and in that period my skin was glowing, then I experienced a period of intense stress, got out of the yoga habit and manifested this condition. It really is negative spiral, since it makes you feel so bad and depressed which in turn makes it worse.
    I don’t know if this is helpful in any way – but I just wanted to tell you how I can relate to your experience. Maybe it takes a long time of relaxation and getting back into a harmonious state in order to really clear it out, I don’t know but that’s what I feel like I need anyway.
    It would be interesting to hear how it goes with the immunologist.
    Best of luck to you!

  14. Lyndon says:

    Found this article by Dr. Andrew Weil very informative about why he’s raising the recommended Vitamin D daily intake to 2,000 iu. He specifically cites auto-immune disease and psoriasis as ailments that could benefit from the increase.

    http://www.huffingtonpost.com/andrew-weil-md/new-recommendation-why-yo_b_446580.html

    1. Helen says:

      Be careful taking Vitamin D. I tried taking 2000 iu’s for two weeks in a row, and my hives exploded. Bad for me. Also, Jacinta’s recommendation of vitamin C will only work for some people. My hives were terrible when I tried to supplement with extra vitamin C. The reason I tried to supplement with these vitamins is because I also suffer from psoriasis, and they were supposed to be good for that.

  15. Hilary says:

    Boy do i know what your going through! I am 23 and i have had this for the last 6 months. at first it was horrible. no one knew what was wrong with me. after several unsuccessful tests (and lots of money later) i decided to go to a dermatoligist. she gave me xyzal and it was a miracle. i still would get occassionally itchy, but it was more of a “normal” itch…not constant itching till i would bleed and look like a monster out of a horror movie. of course, i contracted this problem 2 weeks before my health insurance through my college was about to run up. this meant i faced a possible pre-existing condition. when i finally did get health insurance, sure enough, they won’t cover anything that has to do with allergies or my skin problems. so instead of paying $100 a month for xyzal i switched to OTC Zyrtec. i admit it is not as good as xyzal, but i use it now with a combo of multi vitamin, omega 3 fish oil supplements and tanning! yes i know indoor tanning is not good for you either, but i am desperate. with this combo my skin has been doing great and i am saving a lot of money. if tanning is something that might scare some of you, the bright side is that research shows tanning can reduce the risk of breast cancer. they way i see it, i could get hit by a bus tomorrow and what would it matter then? if it gives you relief then why not. hope this helps readers! i hope everyone’s rash problems go away because they are a pain!

    1. Helen says:

      Well, I went to the immunologist. Dr. Michelle Conroy at UMass. She was by far the most helpful, but I’m still in misery. I’m taking 2 Zyrtec a day, 2 150mg Zantac a day, and Benadryl as needed. Nothing is touching the itching except yoga. When I’m doing yoga, I’m comfortable. I would like to try tanning, as the sun has been out for a few days and the parts of my skin exposed to the sun are more comfortable than those not exposed. I feel like Hilary about the tanning at this point. I’m not enjoying my life at all right now, so why not take the risk to feel better? Does anyone have any tips for dressing in the summer so as not to look like a freak with scars all over? How about living through a pool party or a beach vacation?

      Wishing everyone relief….

  16. Charlene Robinson says:

    I was officially diagnosed with chronic hives April 2009 after being misdiagnosed with the coxsackie virus. Now one year later I have figured out a few interesting facts about my condition no thanks to any of the many doctors I have seen over the past year. One interesting fact is that if I take antihistamines like Allegra, Claritin then I will break out in hives worse than if I take nothing. If I make the mistake of taking an antihistamine and ibuprofen(which the doctors did tell me not to take) then I will definitely have a bad day. If I get heartburn and make the mistake of taking something like Pepcid then I will have a bad outbreak of hives. I never had heartburn until all this started. After loading up on antihistamines last year per all the doctors I saw it is no wonder I felt so bad. I went off all the anithistamines to take an allergy test to see if any foods were causing my hives and that is when I realized my hives got considerably better. Now, I take an occasional Benadryl if I have any issues. I am not sure if I react badly to Benadryl but it lets me sleep pretty good if I am having any allergy issues. Anyway, if anyone out there has had similar issues with antihistamines please let me know. I still do not know why I still have issues with hives but at least I know some of the things that will definitely make them worse.

    1. Jacinta says:

      Interesting that you never had heartburn until you got hives because thats the same with me! maybe it causes inflammation on the inside of our bodies as well. i went and had a gastroscopy because the pain in the stomach was so bad and they said everything was normal.

  17. Bill says:

    Hi,

    I’m 22 and have been dealing with chronic urticaria for 2 years now. I have found 3 things that normally work for me: One is a daily Zyrtec; if nothing else, it puts my mind at ease, and I can relax throughout the day. Number two is a healthy diet. I have found that when I eat too much sweets/fast food/pizza and drink too many sugary colas, even diet colas, I will tend to break out. Lastly I try to take a good amount of Vitamin C each day.

    When I combine all these things I tend to go about 6 months at a time WITHOUT ANY HIVES. But that’s the longest I’ve been able to hold it in remission. The funny thing is that I always seem to break out in October and April. It’s Psychosomatic for sure. I too sympathize with every one of you, this is a frustrating disease that makes me want to stay inside. And God forbid I have to explain it to people…

  18. Beth says:

    I was really interested to find this string. Over the last 25 years, I’ve had two prolonged bouts of chronic ideopathic urticaria – the first in 1985 lasted 2 years, the second in 1999 lasted 18 months. Double doses of Zyrtec seemed to help me the most (this was pre-Xyzal). My question is this: Is there any evidence that there is a cycle to this? Having gone 14 years between my first two bouts, am I more likely to have another in 2013? I’m so happy to be hive-free now, I hope they don’t recur. But I do wonder what will set off the next bout and when…

  19. Erin says:

    I am looking for answers for my daughter who is 4 1/2. She has had CIU for almost 2 years. I was told that hopefully she will grow out of it but as we approach the 2 year mark I’m feeling doubtful. As she is getting older I can tell that the “spots” are bothering her. She will wear pants with dresses and cover herself up when they are bad, which acutally make them worse because when she gets hot they are worse and spred. When she is home she wears usually just underware and hates to be hot, I’m guessing it is because being hot bothers her skin? She is currently on zyrtec or clartin, 1/2 tsp in the am, 1/2 tsp in the pm. We discovered that by splitting the dose it covers her for the day. I am concerned because she is getting double the dose she should be getting but when I would give her less she would have break through hives. Once in a while every couple of months she has a week where she also needs to take benedryol which helps, but makes her tired and cracky. I would love to hear from folks with it as to what makes their skin feel better when they are having a breakout because I tried many things but I am unsure if they are working for her or making it worse. I’ve noticed when she is having a break out keeping her cool helps but any other advice? I know stress and illness can bring it on too. She had the worse break out after I had her sister. It make me feel so bad to know she was stressed so much to cause a reacation. We had to put her on steriods to control it. We have done a blood test to test for allergies but can’t do a skin test because she can’t be off the medication long enough, within 48 hours she is head to toe hives. Thanks for any ideas!

  20. Chris Pollard says:

    Hello,
    Im 46 yrs old,male,and live in the UK.I have been diagnosed with chronic physical urticaria.In the last year Ive been admitted to hospital on two occassions,both for a week,with cellulitis.My immune system got so low that it was inevitable that I would catch an infection sooner or later through a break in the skin.I was put on to IV antibiotics and each time when I came out I felt great,in fact Ive only been out four days.While I was in hospital I kept on having attacks of urticaria,on my scalp,backside and legs.Pressure on any part of my body and stress are prominant factors for me it seems.For over 25yrs I worked as a linesman,erecting and wiring electricity pylons and poles,I was very fit and very strong,full of confidence in my own abilities.Now,I have nt worked for a year and a half,am reduced to incapacity benefit,have no strength,or confidence and have no idea what the future will hold.All I know is that for no known reason my body is attacking itself,there is no real cure and no one knows if it will ever stop.I have seen all manor of specialists and took all manor of medication and still the urticaria attacks occur,every day,especially where/if pressure has been applied on my body.
    I cannot accept that it is “just something that happens to some people”,as I have been told before.There is a reason for everything.I think if this illness was taken more seriously and more money was pumped into the research a link could be found and therefore a more direct cure could also be found.
    I feel for every single sufferer out there and as bad as it sounds its good to know Im not alone.Don,t ever give up wondering how or why or asking questions.Dont ever give up hope…………CP

    1. Jacinta says:

      I agree that there must be a reason…I think there is just not enough people suffering so they dont bother doing the research. I believe its up to us as the sufferers to do our own research and continue to have posts like these to try and figuire out how to help ourselves…

  21. Julie says:

    I just discovered that I have Chronic Idiopathic Urticaria after 6 years of baffling symptoms that made me think I was crazy. I get them internally also. During my first attack, I could not wear clothing or even pick up a cup because my hands would swell. It was so painful I was admitted to the hopital in 1997 because I went to the doctor with intense internal pain. He said he thought my organs were shutting down and admitted me to the hospital. A CAT scan showed what they thought were cysts on my liver and elsewhere. They were internal hives. I have been to the emergency room in excruciating pain 4 times this past winter because of attacks with hives and in my esophagus and was all raw inside and it hurt to eat for weeks. I was under severe stress so it made me flare up. I got married last September and then went through the death of my father and other family members, lost my restaurant, my home, etc. I became unable to work, had to go to a psychiatrist, doctors and lots of sedatives and anti depressants were prescribed. I was told I was having panic attacks. I thought I was competely crazy. I had to quit working. This all took a heavy toll. My husband is gone from my life and I am now living on my own with my sons and working from my computer at home. This has placed serious limitations on my life and I am going to take yoga classes, stay quiet and calm, and control my entire enviroment carefully to try and regain my health. If feels better to have gotten this diagnosis from an allergist after so long and reading about it helps me understand that I am not crazy. I agree this is hard to explain to other folks. At least my family knows now and are very supportive.

  22. Renee says:

    Thank you so much for your comments everyone! It does me so much good to know that I’m not suffering alone. I have CIU and angioedema. I have had this for 6 years now I have been to 8 different doctors. They all want me to take medicine. When I first got diagnosed the first doctor had me on steroids for a year and a half and I now have the beginning stages of glaucoma and I’m 30! I have tried all the drugs and I couldn’t function. I was too sleepy all the time and the steroids gave me the worst mood swings. I’ve had to come up with things that work for me. I can’t take the advil or asprin either. I take 2 Zyrtek a day and when I start to become immune I take the generic and switch back and forth. When I’m in a really bad state I use Eucerne Lotion (the calming creme and the calming creme anti-itch lotion) I also use the cortizone 10 easy relief roll-on stick. I also drink Xango it’s a mangosteen drink which is supposed to help with inflamation. When I have really bad flare-ups I have to have an eppi-pen around too because the have gone in my throat before. My face swells really bad too especially my lips they hurt the worst. What I really hate is how unsympathetic everyone is. The doctors especially. They always say to me it’s just itching. Yeah itching for years on end that makes me wanna kill myself! Does anyone else get that and also all the advice on what to do and what I’m allergic too? Nobody ever believes me when I say I’m not allergic to anything. And the zyrtek bottle say don’t exceed more than 1 a day well I take two and that worries me about what effect it will have on my health which leads to stress which leads to flare ups! One just doesn’t do it for me anymore. I’m excited to try the vitamins and see if they work for me any sugesstions on brands? Thanks.

    1. Erin says:

      I hear you on the unsympathetic thing. I know my daughter allergist said well it is JUST hives. I should of said yeah all over her body that drive her crazy with itching all the time. I mean yes I know it does not threaten her life but to see her so uncomfortable and with me with no way to help except give her medication it bothers me. I also worry about the amount she takes but I have been told she “should” be ok, which does not make me feel good.

  23. Helen says:

    I have to tell you all about a little miracle that I found out about. It’s called l-Lysine, it’s available in health food stores and online. It’s an amino acid that takes the itch away!!!
    My cousin mentioned that it helped her when she broke out from the sun in a rash, so I tried it, and it really brought me a lot of relief from the itching. I take 4 a day, spread out throughout the day.
    So this is what I take now: 2 Zyrtec or Claritin (one am & one pm), 2 Zantac (ranitidine, one midmorning, one before bed) and with each of those pills I take one l-Lysine. My itching has been well-controlled for about 4 months now.
    I urge you to try it!!!

    1. Helen says:

      Oh, I wanted to add one more thing: after I shower, I wipe witch hazel all over my body with a cotton ball or two to “tone” my body skin and keep it cooler and cleaner. Then I use a combination of two creams: Eucerin Anti-Itch lotion with the menthol in it, and MetaCare gluten free lotion. They keep my skin cooler.
      Also, I have gone completely gluten-free, citrus-free, and alcohol-free. Although those food items do not show up on my allergy tests, I get hives every time I eat them.
      Hope these tips help!!!

  24. Karie says:

    This blog has been so informative and helpful in learning more about CIU treatments. I was diagnosed with CIU 12 years ago after much suffering and many tests and treatments – including slathering my entire body in some potion in case the problem was scabies!! And to think it all started with two small itchy bumps on my shin I thought were bug bites. When I think back to childhood, I remember periodically having itchy elbows with little bumps on them. Must have been the beginning of “the fun.” I’m pretty sure my outbreaks are caused by stress, although I don’t feel outwardly stressed. Just seems that the outbreaks occur sometime following a hectic period in my life. I will definitely try some of the suggestions you all made, such as Zyrtec, Vitamin C and fish oil. Thanks for sharing your stories, and wishing us all and itch-free future!

  25. Shannon says:

    My sympathies to you all out there! I had my first round of CIU in 2005. It lasted about 5 months and went away. At that time I took zyrtec, singulair and a couple of doses of prednisone. As quickly as it came, it went away.

    In April 2009 I had my gallbladder removed. I was stressed for 2 months prior because they couldn’t find a cause of my sickness until they realized my gallbladder was emptying bile into my stomach. After my surgery, my life changed forever.

    I have been on prednisone since April 2009. I have also tried every antihistamine out there. Xyzal, Claritin, Allegra, Zyrtec, Benadryl, Hydroxyzine, Singulair and many, many others. My daily regimen now is 20mg of prednisone, 20 mg claritin, 50mg benadryl, 300 mg zantac and 40 mg of protonix. We are trying very slowly to wean me off of the prednisone. My life is completely changed. Every single day of my life I am fighting these hives/angioedema. I have been to the Emergency room over 40 times since April of last year. My medical expenses are over 39K and that’s just MY portion after the insurance. I have gained 56 pounds on the steriods, I’m mentally depressed and I am simply existing instead of living.

    For those that know nothing about this disease in and out of the medical field, we “just” have hives. I’ve been told to use itch cream by friends… I’ve been told I’m a hypochondriac…and I’m frustrated that there is not more medical research or help for this horrid disease. I’ve been to the ER and been told by a few ER doctors that it’s just hives. Some ER doctors have admitted me. Some have no clue how to treat me. I’ve been to the Mayo Clinic and spent over 20K in Rochester, Minnesota to the Chief of Allergic Diseases and he says the same thing. There is no cause… there is no cure..

    How do we live like this? My last resort is to reach out to those suffering and to group together and start a foundation/forum to get this disease out there. Demand more research. Demand we be taken seriously. I told one doctor recently that I wished she had to live just ONE WEEK like I’ve lived for the last 1 1/2 years… then she would have more sympathy for what we endure!

    I’m going to try the vitamin regimin you have all suggested. I’ve tried everything else there is to try. I do know that stress is a MAJOR enducer for any kind of CIU.. pressure, cold, hot, vasculitis, etc. A positive attitude is a MUST although as with myself, it’s very hard to be positive when you’re covered in hives/angioedema every single day of your life.

    Thank you all for your comments and for sharing your stories. I know I’m not alone out here with this horrid diesase and it’s refreshing to find others who are willing to share so we all may being to heal.

    My very best to all of you!!

    Shannon

  26. Stina says:

    Hi!
    I have had urticaria in my face and on my neck for a total of about two years now. Reading all your stories is really interesting, and it seems like a lot of you take quite a bit of medication for this. I don’t. I live in Sweden and when I went to a doctor they didn’t even mention urticaria, but just said it was regular eczema (I had that as a child), and that it usually comes on in the face as an adult, and that there is nothing you can do about it but put on cortisone cream (for me it just gets worse with cream though)…. I know that what I have is urticaria after what I have read about this, having seen pictures etc.

    I have read quite a lot about this and also experimented myself with different kinds of treatments (vitamins, acupuncture, homeopathy etc…) without any results. I tried acupuncture with a really renowned acupuncturist in Stockholm who has helped many many people with severe allergies, but it got worse and worse after each treatment. It isn’t uncommon to get an initial worsening of symptoms after treatment, but this just went on and on so I had to stop.

    I am really interested in the role that psychological factors and general and emotional stress play in chronic urticaria. The disease is a mystery, but as for myself, I feel that it has to do with profound stress in my life. Just interested to hear if any of you have similar experiences. Maybe the causes are different for different people, but I am very curious to hear your stories to see if there is some kind of pattern for the onset of the disease. If so, perhaps the “treatment” is not so much to find with medication, but in stress management techniques, psychology etc.

    The following supports my beliefs: I have had this since August 2008 and it came on in a period of huge emotional stress in my private and professional life. Then this summer I had three months off, and I spent summer at our summer house with my children and family. No stress, no worries, no pressure from anyone. And – the urticaria went away completely. I was NOT living particularly healthy – we had a glass of wine almost every day (sumer time!), had ice cream, I din’t take any supplements etc. etc. Pretty interesting I think.

    I then went back home, did a huge move with my family, new job in a school with wild children (lots of stress), new school for my own kids etc. and the hives have now returned pretty bad. I am soooooooo devastated of course, because it means that I start to withdraw from social interactions, and have a really hard time at work, get irritated with my children etc.

    I would like to share this story because I am interested to hear if any one else can relate to this, or have similar stories. Like I said – it would be great to just get some feed back on the role of stress in your lives in order to understand urticaria better.
    Thanks for reading!

  27. I’ve had diagnosed CIU for 10 years. I was diagnosed at 12 and I am now 21. I remember being in so much pain from the hives once that I told my brother if he didn’t give me the benedryl, I’d rip the skin off his ears! (I was off antihistimines prior to the allergy test).

    I was put on 10mg of Doxepin once a day and remained on it until about 6 months ago. I don’t break out in hives from anything specific, but lots of things aggravate my skin.

    I get itchy and burning sensations and the minute I itch, it turns red and raised, and bumpy. Anything from heat, to cold, to water, to clothes, etc can bother me…it’s as if I’m allergic to EVERYTHING!

    I started on Xyzal 6 months ago after seeing another allergist and I gotta say…this stuff is AMAAZING. It works for my seasonal allergies as well as the CIU. As long as I take it, I’m fine. I can even skip a day and only have very very minimal problems on that day. Sometimes, stress causes flare ups (like right now!!) but they’re short lived.

    Mine are 20-60 min flare ups several times a day usually. When on the medication, I’ll have contact dermatitis, but it doesn’t usually itch or burn, just becomes red and raised.

    I also found out I was lactose intolerant but cutting out dairy hasn’t had much of an effect on the urticaria.

    I’m just so sick of this. I’m miserable. I found a study at a university in Boston on Urticaria that I might participate in, just to feel like I’m doing more than waiting for answers.

  28. Stacy says:

    Happy 45th bday to me! I have had CIU since I was 12 years old. I had hives from age 12-24, then had 3 kids, then hives again from 34-37. And after 8 yres of remission, they returned for my 45th bday. I saw a Dr. Allen Kaplan (who I think has retired) in South Carolina and I went to Mayo Clinic in MN. I took Benadryl, Atarax, Allegra, Zantac, Zyrtec, Periactin, and Cyclosporin. Prednisone was the only thing that worked. When taking Cyclosporin my blood pressure went sky high so I took Toprol XL (a beta blocker) and my hives went away for 8 years.

    So, I am thinking that there is either a cardiac or hormonal connection that hasn’t been determined or researched. I go to sleep at night and wake up with my head covered in a hive hat. It is awful. The drugs don’t help. I am going to a new immunologist on Friday who will likely be insensitive but I will insist upon a prescription for Xyzal since I’ve never taken it.

    Doctors don’t know how badly hives suck. If you have cancer, you live or you die and there’s treatment. With hives, you live a poor itchy existance, you don’t die, but you simply have to tolerate. And, going to work covered in hives is awful and uncomfortable. I swear I could be suicidal with this crap all over my head and body!!! But, I have 3 teenagers so no worries there. Please, if anyone knows of a hormonal connection or something that makes this easier, let me know.

    Thanks
    Stacy

  29. Joseph Franklin says:

    Thanks for the information. I have chronic urticaria and no one can understand what I am going through unless they have experienced it. I appreciate having a place I can go to find ideas on how to cope with this problem.

  30. Tracy says:

    I suppose anyone reading this knows how thankful I am to have found this site. I turned 35 this past April and honestly have not seen a completly well day since. I am a nurse in a large heart and vascular center, so needless to say I am stressed, but did not have problems until almost a year of working there. My chronic idiopathic hives came on a few at a time at the end of April and I have had pressure hive since 2003. By the 5th of May I was covered from head to toe in these horridly miserable splotches, which for some reason causes me to have increased muscle cramps in my legs and up each side of my spine. They have red rasberry outside edges and yellow centers and they move around on my skin almost like they are alive, then grow together to make even larger and larger hives. And yes they are inside too! I can feel them in my throat when I swallow and anymore, my stomach doesnt growl when I am hungry, it cramps till I am holding it and buckled over in pain. I ended up in the ER instead of working that night, and like most of the rest of you told by that doc “its just hives”! Well eight months later i still suffer with “just the hives”!
    My family doc thought it was anxiety/stress, she also consulted an allergist who suggested it was my thyroid. If anyone has their thyroid checked be sure to note one very important aspect of the test: there is a 5 panel and a 7 panel!! The 7 panel includes the levels of thyroid peroxidase(TP) and thyroglobulin(TG) these two can be way out of line while the other 5 are fine and it can be overlooked completly. My TP was imeasurable over 1000, normal if i remember right is like less than 10, and my TG was 187 with normal less than 40. So my first new drug was Synthroid and a diagnosis of Autoimmune Thyroiditis!
    June 9th I end up at the allergist office because the Synthroid just wasn’t keeping the hives at bay like it did at first. He prescribed Plaquenil 200mg twice a day . I made it 4 months with minimal hives. The odd part though, was every month I would get hives, and yes it would start 12-24 hours before menstration. So the family doc had me to start using progesterone cream thinking that this hormone was playing a role in keeping the hives at bay and when levels dropped just before menestration the hives would come back. Now my cycle is not quite regular anymore.
    In september, the 30th actually, after the monthly bout of hives. . .they just didn’t go away! the allergist took me off plaquenil, put me on cyclosporin, which about blew my head off with a blood pressure of 170/110– my norm is 112/68. I thought i was checking out of this life that morning. Took me off that one and put me on dapsone, normally used for treating leprosy. My pharmacist took time to speak with me just due to the variety of meds I kept coming to get. Now he follows my progress, or should i say nonprogress. Prednisone was the only relief, and after missing the whole month of May and then the month of Oct, my time off from the hospital was out and I had to go back. The allergist prescribed 20mg prednisone daily and i ended up getting hives every evening so we split the dose and this worked great till mid Nov when i started to break through the 20mg and had to start tappering up on the med instead of down which was the original plan.
    Since the first allergist would not test me for allergies I sought the dreaded second opinion. Hoping for someone who would just listen to me I went to a highly reccomended allergist local to the area in which I work. Even being a nurse myself, and trying to give this doc the very best assessment of my ordeal- he would interrupt me and tell me how it really was, HOW would he know, i was the one living it for the last 1/2 year. This was this past Dec 6th, got the allergy testing on the 14th, and sure enough allergic to nothing! This allergist put me on Periactin 4mg twice a day and doxepin 25mg two at night. Until this past Monday I was ok, but was having bouts of shortness of breath to the point where I could not go to work again- how frustrating this has been.
    So right now i am supposed to be taking: FOR ANXIETY/STRESS;
    BUSPIRONE 15MG TWICE DAILY,CELEXA 20MG DAILY, VALLIUM 2MG TWICE DAILY.
    ANTIHISTAMINES;
    ALLEGRA 180MG TWICE DAILY, ZANTAC 150MG TWICE DAILY, PREIACTIN 4 MG TWICE DAILY, DOXEPIN 50 MG AT NIGHT, ATARAX 25MG IN AM AND 100MG AT NIGHT.
    STEROIDS;
    PREDNISONE 10MG EVERY OTHER DAY FOR 5 MORE DAYS THEN 5MG EVERY OTHER DAY FOR THE NEXT MONTH (AND GAINED 25LBS).
    THEN SYNTHROID 37.5MCG TWICE DAILY
    AND PHERERGAN 50MG AS NEEDED (an anti-nausea med for when the hives are inside, but who wouldnt be nauseated after taking all that, not to mention my last set of labs came back showing slightly decreased liver function). The nurses I work with ask me how I stay awake enough to work.
    My thanks to Lyndon for initiating this conversation forum not only for the suggestions of what works and what doesn’t but just for a place to get all this off my mind and talk with others that TRUELY KNOW what i am dealing with. I will be trying your suggestions and trying not to figure out the cause anymore, it is quite frustrating enough without racking my brain and everyone elses i work with about what causes it could be. I am off work right now with a round of shortness of breath and outbreak of hives so no better time to initiate the new treatment. AGAIN. . . THANK YOU!!!

    ON A POSITIVE NOTE: I USED TO SMOKE AND IN THINKING IT MAY BE THE NEW CHEMICALS THAT MAKE CIGARETTES GO OUT IF NOT SMOKED, I DID QUIT OCT 26TH!

    SINCERE COMPASSION FOR ALL THOSE SUFFERING WITH JUST THE HIVES,
    TRACY

  31. Lyndon says:

    Thanks for all who keep adding their stories and solutions to the thread. It’s been very helpful just to know there are people who don’t think we’re crazy. Just an update on where I am.

    After taking just a generic Xyzal every morning for a few months, I switched to one generic Zyrtec every morning for the last couple months and haven’t been able to tell a difference. I don’t think I’m completely in remission or cured because if I go more than 36 hours without a Zyrtec my skin feels like it’s crawling or numbing in places, which usually precedes a breakout. I need to be on Zyrtec daily several times during the year for allergies anyway.

    I’m not taking the vitamin regimine like I should. Just a multi-vitamin daily with the Zyrtec. Ibuprofin and Naproxen still cause a reaction in me, so I just take Tylenol instead when needed.

    That’s it for me. I’m hoping to be completely back to normal one day perhaps or at least hoping not to have a major flare up that takes months to get back under control again. Please keep sharing your story and what works for you.

  32. Elizabeth says:

    Thanks to all who contributed.
    Please notify of updates.

  33. JD says:

    Hi all – I am also a CIU sufferer. I have had chronic hives since an allergic reaction to aspirin in 1996. I’ve been on every antihistamine imaginable. Periactin worked for a few years but then stopped. I’ve been doing Zyrtec for at least five years but now that is starting to not control it well. Recently went to a new allergist who prescribed Xyzal, haven’t started it yet. Also going back on the Zantac 2x a day. Benadryl does nothing for relief. Triggers for me include cold and hormonal (worst through my cycle week). Alcohol and stress exacerbate it as well. I also notice if I wear certain fabrics or tight shoes that I start to break out… strange triggers. Blood tests revealed a positive cryofibrinogen level. Positive ice cube test. I just moved to a new city and I’m thinking of trying a naturopathic doctor. Has anyone done that?

    Thanks! Comfort and relief to all CIU sufferers! U are not alone!

    1. Tracy says:

      I see a naturalistic doctor on the 26th of January. Im aquainted with a few people who have been to this doctor and have nothing but good things to say, so we’ll see how it goes. One of the persons I spoke with said that she was just swelling, not hives, and they figured out she had a reaction to the coating of one of the meds she had been taking. I’ll post about the visit, let us know how yours goes.

    2. Tracy says:

      OK, I saw my naturalistic doctor today. He suggests that my liver is weak and damaged and the toxins and poisons that would otherwise be removed by natural liver function is building up in the blood and presents in the skin as hives. Its understandable then why antihistamines didn’t work and actually added to the problem.

      We are not changing things up to quickly so we can pinpoint what is and is not working. Eventually I will replace the buspar and celexa with folic acid, which in a study of pregnant women taking increased doses suffered no post partum depression. He also suggested that the number one food for anyone suffering with hives is beets, anyway you can get them, fresh, frozen, canned, pickled, and to eat a minimum of one beet every day! I am to drink the juice of one lemon or lime everyday to open the ducts of the liver and take milk thistle 900 mg everyday due to its hepatoprotective mechanism. The fish oil will now be 6000 mg a day due to the anti inflammatory properties. Decrease comsumption of sugar and caffiene and start a mediterranian diet.

      I am to follow up in 30 days to see how the progress is going. I’ll keep everyone posted on how it is going.

      1. Lyndon says:

        Thanks for sharing Tracy. Hope you get some great results. That’s really interesting about the beets. I wonder why they are supposed to help. I’ve heard about lemon/limes for liver. Sounds like the Milk Thistle might not be a bad idea. When you mentioned liver issues, it jarred a memory that my liver enzymes were all out of whack on a test several years ago, mimicking hepatitis effects or something. I’m wondering if there’s a connection between liver function and hives now. Glad I’m in the dormant stage with just an antihistamine a day now, but I would still love to get to the bottom of this and fix it from happening again. I spent 30 years of my life without hives and would like to know I’m back to normal for good. Best of luck to you!

  34. Tracy says:

    Well, here I am 2 weeks later. One doctor wouldn’t give me a script for Xyzal, told me to just use Zyrtec, but another one did write a scrpit for it. Took my first one today at 5pm. It is near 11p now and I can already feel my skin calming down. The true test will be what I wake up with in the morning. I started the vitamin regimin on Dec 30 then my PCP tweeked the doses for me.
    My PCP beleives an extremely warm bath with a scrubie, back brush, and moisturizing body wash is one of the worse things you could do for this condition, but it has been taking my itch away. After the bath I use a deep moisturizing lotion from head to toe. I have much less itching than if i take the cool shower.
    I still have the flare ups during my cycle, so we stopped the progesterone cream. I no longer take anti-histamines other than xyzal. I believe it was harder to come off the prednisone while I was on those. I was completely clear for several days until the start of my cycle then the hives exploded.
    Now my meds are: celexa 20mg, buspirone 15mg bid, synthroid 37.5mcg in am and 25mcg at nite, atarax 50mg at nite as needed and vallium 2mg as needed, xyzal 5mg at night ( because my hive are worse between 3 and 5 am), 1 multivitamin, vitamin C & D 2000mg and 2000 iu, B-complex 50mg each, calcium 600mg (due to possible damage to bones from high dose steroid therapy), 450mg apple cider vinegar tabs, and 4000mg fish oil. This sounds like a lot, but I feel better and have about half the prescription meds as before. It is very hard to keep a positive attitude, but that is a major key for relief. I have been drinking unsweetened herbal teas at nite before bed to stay relaxed and help set aside time for reflection or meditation.
    Praying for relief for everyone!

  35. Ron says:

    Take Elavil 25mg every day. Have been CIU sufferer with pressure urticaria as well.

    Elavil is the ONLY thing that has worked. TRY IT!!

    1. Liz says:

      Did anyone try the treatment explained in the below link?
      It is an eBook, and it costs $47

      http://www.urticariahivestreatment.com/

      1. Lyndon says:

        No, Liz. I haven’t tried it. I’m kind of leary of commercial sites like that to be honest.

  36. Molly says:

    Thanks to everyone for their information and posts. This is the first site I have found that is so current and informative. My history: when my sister and I were very little and we just recovered from a bad flu, the first or second day we felt great we would break out head to toe in hives. Our family doctor told my mother we were allergic to our own immune systems. At 12, one summer every time I got into a pool after being out in the sun, I would break out in hives. The allergist told me I was allergic to temperature change. At 33 I moved to the high country in Colorado and it has gotten progressively worse over the past 8 years. At first I had just random small hives where cloths were rubbing on me – like a jog bra. But for the past couple of months it has been pretty bad. I only use hydrocortisone cream and hate using that. I don’t take anything other than supplements.

    I have had periods of relief – a few years a ago a week in Hawaii was completely hive free. At work, I have to do a lot of laundry and thought the hives were a reaction to a potent product we had just started using. Once we switched, they were greatly reduced, but not gone.

    After reading some suggestions I will start taking more supplements. I went off all supplements in December by the advice of a dermatologist and a small rash that I had on my face (was from a new facial product). But the hives haven’t changed. So as of today I am back on vitamin C, krill oil and will start with more apple cider vinegar.

    I am curious about liver health and do take milk thistle. I have a new book called Body Ecology Diet:
    http://www.bodyecology.com/
    that focuses on candida overgrowth as a cause for many health issues. Has anyone had any experience or problems with that? She has a section on liver detoxing as well.
    I just bought a skin cream today:
    http://www.skin-remedies-store.com/
    The double strength derma cream with urea that I read is a natural help for itchy skin. It is an ingredient in calamine lotion. Has anyone used calamine with any results or a cream with urea?

    I am currently off corn and wheat but haven’t noticed any changes. I went off wine but no changes there either. I have never had a food allergy but have always been allergic to cats, pollen, dust, etc.

    I plan on getting my annual physical and will be requesting a lot of blood tests – cortisol, vitamin D levels, general hormone levels, liver health, and a few more.

    Thanks again for all of the posts and I wish all of you calm and healthy skin!!!
    -Molly

  37. Lyndon says:

    Hi all, I’ve moved this post and all its comment to a new blog, hivesrelief.wordpress.com. Please join the conversation at the new site. I’ll be posting new articles related to CIU and starting new conversation threads for all of us to share our experiences. Thanks for sharing what works for you. I know it has been extremely helpful to me and many more.

  38. Carolyn (Columbia, SC) says:

    I have read all these posts, and realize that I seem to be one of or the only veteran to chronic urticaria. I have dealt with this autoimmune disease/blood disorder on and off for the past 13 YEARS !!!! So, i will tell my history in hopes it can help someone.

    First breakout was early 1997, I was a high school junior in Manchester CT. I had all the allergy tests, etc. After 7 months of nothing working and having no allergiest with any answers, I was extremely lucky to find Dr.Jay Sutay, a pediatrician in South Windsor CT who he himself had the same thing. Like many of the posts on this site, prednisone, zyrtec, zantac, and doxepin were the first mix we tried. This combo didn’t help. Then we added, claritin and atarax to the mix. Alot for a 17year old to handle. I was taking more medication that all my grandparents combined! Stayed on all these meds for 6+ months. DO NOT TAKE PREDNISONE I was on it for 9 months and then we started to slowly decrease the steroid. About 1 month later, I started getting these horrible headaches. I would go to sleep and could literally hear the blood running thru my head where I was pressed against my pillow. Of course, NO ONE could figure out why. Started to loose vision, everything was blurry. Finally saw an opthomologist who discovered I had pseudotumor cerebri from the long term steroid use. Basically I had all the signs and symptoms of a brain tumor, but with no tumor. All the cerebral spinal fluid was getting congested in my head. STOPPED steriod and added med to help clear out the pseudotumor. Was still so bad, had to get a spinal tap. It was about a year from the onset that we dropped off all the meds with out breaking out.

    2nd time I got it was almost 5 years later-while a senior at the university of sc columbia. As soon as it started, got immediately back on prednisone, atarax, doxepin,nystain, allegra, and zyrtec. Saw a local allergest who had no idea what to do with me. I was referred to the National Allergy, Asthma and Urticaria Center in Charleston, SC. THIS WAS THE BEST THING THAT COULD HAVE EVER HAPPENED TO ME!!! It was there that Dr.Alan Kaplan saved me. He was doing and had done many studies on my condition. We added zantac and accolate to my med list. 6 months later finally tapered off prednisone. and this episode ended shortly thereafter.

    3rd time was only about 5 months later. Started all over again, but this time , we decided to try something new. He was experimenting with the use of Cyclosporine and I quickly agreed to be part of this. Cyclosporine is an immunosuppressant. Basically suppressing the immune system and therefore decreasing the body’s ability to fight itself. This worked wonders and stayed on it, along with atarax, allegra, zyrtec, and accolate. 5 months later started to decrease med amounts. Once off cyclosporine and most of other meds, I wanted to start a family. He said that from his studies of chronic urticaria, most women never experience another breakout after giving birth to a child.

    4th TIME was last september (2010). My daughter already 5 year old, and my thinking I would never deal with this again. Dr.Kaplan has since retired and only lectures and teaches. I am now seeing his replacement Dr.Patricia Gerber. Immediately started on the high dose of cyclosporine, atarax, and allegra. With in a few weeks, i was completely hive free. However, when bloodwork was done she did find that my levels were extremely high and said to prepare for another long bout. It has been 5 months since they started and am hive free, but still on all my meds. ( started out taking 8 – 25mg pills of cyclosporine 2x a day, 1 – 50mg pill of atarax 4x day, and 1 – 180mg pill allegra 2x day.). Now down to 4 – 25mg pills of cyclo per day, 1-50mg atarax 2xday, and still 1-180mg allegra 2x day. We’ll see how long this lasts

    Having an autoimmune disease is horrible, having head to toe hives, itching and swelling is unbearable. Having no cure is heartbreaking. But, you can deal with it. Stay strong.
    I understand what you are going thru and hope that my story helps.

    I really hope that this info helps someone!!!!!

  39. Molly says:

    Hi Carolyn – thank you for the post. I have a question for you. You wrote:

    However, when bloodwork was done she did find that my levels were extremely high and said to prepare for another long bout.

    Can I ask, what levels were high?

    Thanks!
    Molly

  40. Jennifer says:

    I have suffered with idiopathic uticaria for years. I have tried everything for releif. Benadyrl, Claritin, Doxepin, Vitamin C, etc. I started taking Zyrtec 2 weeks ago for allergies related to pollen. I am taking Zyrtec every day and after 2 or 3 days, my itching from the uticaria stopped! I have had two weeks of releif-no itching at all! If I miss a dose of Zyrtec, I notice I will start itching if its been more than 24 hours since I have taken Zyrtec. I am so thankful to have found something that works. I wanted to share my experience and hopefully help someone else.

  41. Sarah says:

    I am so relieved to find such a supportive site! I was diagnosed with CIU nearly six years ago. I have been taking 180mg of Allegra (fexofenadine) every day since then, and my flare ups have literally disappeared; one in awhile the angio-oedema will show up in my bottom lip or on my hands, but for the most part, I’ve done really well with Allegra and the occasional Benedryl. I guess my question is, is my system slowing becoming immune to antihistamines? When I was first diagnosed, I didn’t know what to do so I would literally take 4-5 Benedryl at one time to try and calm the urticaria. I only did this a few times, but since I have been taking the Allegra every single day for six years, suddenly I am getting seasonal allergies, as well as an allergy to cats, and NOTHING is making those symptoms go away–am I building an immunity to antihistamines, or is this all in my head? Please help with any clarity you may have regarding this!

  42. Brandon says:

    I’m 27, I’ve never had an allergy before, I’m physically active and fit, I’m organic and have a healthy life style, and all of a sudden my body decides to have CIU 5 weeks ago. I have studied my diet, routine, household, and flare ups closely and am left puzzled and and frustrated. I finally gave up the personal fight with it and got an outside opinion today from an Allergy clinic. They have prescribed “Leuocetirizine” as a starter drug for trying to get my hives under control. I hope it is a magical drug that stops the 24/7 irritation, itching, and anxiety allowing me to get back to life as I knew it. I was so hoping these hives would just blow over and be a temporary irritation, but from what I read online the CIU problem often times stays around for years. Anyone have inspiring, hopeful stories or any homeopathic solutions to CIU that can help my body find normalcy again?

    1. Sarah says:

      Brandon, I completely understand your frustrations. It really makes no sense that it just pops up out of nowhere! I was diagnosed with CIU when I was 18, my senior year of high school. It was humiliating. I would be lying if I said it has been an easy road ever since. Yet here I am, seven years later, and I have just begun weaning myself off of my meds. My flareups were so bad that I took 3-5 benedryl a day, spending most waking hours walking around like a zombie from the benedryl; yet the great news is CIU DOES GO AWAY. The downside is that it does it on its own time, not yours. After a few months on debilitating benedryl, I was switched to Allegra every day, and remained on it until just a few months ago when I decided to wean myself off (also per my allergist). It’s terrifying at first…what if I get another hive in my lip or angeodaemia in my hands again or or or? But slowly…surely..your body will rid itself of this nasty CIU business. I still have the beginnings of a flare up from time to time, but more so, I am doing a lot better. Have faith! I know there isn’t much anyone can truly say to ease the awfulness, but just keep truckin’. This WILL go away. Take care of yourself.

  43. May says:

    I’m 37 and have had CIU for a year and a half. I have been treated by a doctor at Johns Hopkins who uses sulfasalazine as a treatment. With sulfasalazine, I was hive-free for over six months – until we decided to try weaning off of the drug. Went from 4 to 3 pills per day and 3-4 weeks later I was breaking out again. Covered head to toe, eyes swollen, etc. Went back up to the 4 per day which should take effect in the next couple of weeks (it takes about a month to build up and same to get out of your system apparently) In the meantime, I’m taking omega-3 fish oil, vitamin c powder, tumeric, and loading up on the anti-inflamatory foods. The jury is still out of the effectivness of the diet / supplements for me but I’m hopeful and just made an appointment with a natural doc / accupuncturist for next month. If you’re taking votes – my vote is hormonal / stress causes of this irritating disease.

  44. Brittany says:

    Oh wow, there are others out there? Lol I just.had to say thank you!! Ibuprofen and nsaids mess me up, I turn into a monster, the first time I took one I had.to have my sis take me to the er. my doctor prescribed me dapsone, ive been dealing with tjis for 1 year 3 months and its been going ok on that and ceterizine

  45. Cullen Rowe says:

    I have been part of an clinical trial in the US for a drug called Xoleir since May. It was discovered that in giving asthmatic patients the drug it also put chronic hives in remission. I have enjoyed the first summer in six years without worrying about covering my skin. Prior to the clinical trial, I was lucky to have a day without severe hives. Hospitalizations, puzzled doctors, social embarressment, depression…I haven’t had an outbreak since my first round of injections. I also take clariten everyday. I am not trying to promote this as some miracle drug, but as someone with CIU it seems to be. However, it is only a matter of time until the CIU comes back. I received my last shots a month ago. I am grateful to have found this website with all the great suggestions towards remedies and or relief, especially knowing that my CIU will come back.
    If anyone is able and willing to, you should check out these clinical trials. For a 29 year old woman, it was amazing being able to enjoy my summer without concern towards my appearance.

    1. blake says:

      I have done some research on this shot and brought it up to my allergists just last week. He told me it would most likely work for me but insurance would not pay for it because its not a treatment for hives. He said it would cost me approx. $12,000 out of pocket. Everything I read said the shot was from $500-$1000 per shot/amount of dose. How many shots did you take and amount? From my understanding this medication is being used in a trial and hopefully soon it will possible for people with CIU to try this medication. Here is a link to the article.

      http://skin.gcnpublishing.com/index.php?id=372&tx_ttnews%5Btt_news%5D=54982&cHash=4d86274d2f

    2. Sheila Moore says:

      I just spoke to my allergist about this today, and he said it runs about $750 per shot, and is not recognized by the FDA yet for CIU. Some people are in remission after 2 shots, one recorded case took 27 shots.

  46. Marcey says:

    Well finding this site has honestly not made me feel better as i just received my diagnosis this afternoon. I recently had gum surgery and had a severe allergic reaction to Clindamycin with hives head to toe and my throat closed so had to go to the ER. I only had taken one pill. The ER gave me the standard steroids and benadryl, but the hives did not go away. They continued to worsen and then 4 days later my throat closed again while at work and I can tell you my anxiety and stress level went through the roof, by the time I made it to the ER this time my blood pressure was 177/120. They gave me an Epi Needle this time and more steroids and benadryl. Sent me home with Prednisone which is horrible, it is making all of my joints ache and feel anxious. Keeping in mind that i am still not completely healed from the gum surgery and have the second round of surgery in 2 weeks. I am also to avoid the Naproxen which was prescribed for the surgery. But hives still persist. So went to the allergist today and got the diagnosis. Reading all of these posts i can not imagine how long everyone has suffered from this and that i might just be starting – at 43! I had been under an extreme amount of stress over the past year and had no outbreaks of any kind until this reaction to the medication. But since the medication is out of my system and the hives are still here it looks like I have the starts of CIU. I am hopeful that the Zyrtac and the Allegra will help as I do not take any types of medication – not even aspirin and do not want this to become my new lifestyle. Wish me luck and i will post back.
    Marcey

    1. Lyndon says:

      Marcey, I’m sorry to hear about your complications. If it is CIU, it will get better. I know it might not feel like it at the moment. If the Zyrtec doesn’t help at first, ask your doctor about Xyzal. It was the only thing that helped me at first. Naproxen was also a major trigger for me for a long time, but I’m able to take it without any side effects now. I wish you well!

    2. Sarah says:

      Oh Marcey…I am so sorry to hear this 🙁 I can somewhat relate to your experience, as I found out I have CIU through taking clindamycin! Strange, isn’t it? 🙁 Good luck with your second surgery, and be really really nice to yourself. It’s a tough road…you have to admit, it’s kind of nice to see a support group online about this weird disease we all have. I wish you much luck and am sending prayers your way. Take care Marcey!

  47. Marcey says:

    I just took my first Allegra this morning and feel like I am literally drugged! Are there any side effects that I should be aware of?

  48. naitsha says:

    I had no idea about the nsaids! I have been suffering with CIU for 2 1/2 years, but was just diagnosed in 2 months ago. I have been taking nsaids atleast once a week forever, and due to sciatica daily for almost a year. My allergist never mentioned that i shouldn’t take it. I am taking Allegra and Zantac in the morning, and Zyrtec and Zantac at night. I hate taking meds, but one missed dose and I am on fire. I really thank you for this page. now I need to find out how to control the sciatica without aleve.

  49. brooke says:

    My 7 year old daughter has CIU and we have tried a few different meds but end up having to stop them due to very tired or really effects her behavior after about a week. She’s been on Xyzal for about 8 months now and has done great up until this summer she’s had to start taking it alot more often. Now I believe it is whats making her have such stomach pains. Has anyone out there tried acupunture for this problem? She started with the CIU when she was only 5.

  50. Priloza says:

    Hi,
    I’m 28. I’ve been suffering from chronic idiopathic urticaria for the past three years. It always starts in September and lasts till the beginning of December. The weird part is, I didn’t get it last year; I thought I was cured but this year it’s back again.
    I went to three or four completely clueless dermatologists (who suggested an array of useless blood tests) until I found an angel who recognised my condition for what it was. She prescribed me a short duration of steroids combined with other antihistamines. That really worked for me. This time around, I’m in a new city and haven’t found a doctor as good as my old one. She’d already warned me against taking the prescription without physically coming in to her office so taking the old drugs is out of the question.
    Right now I’m actually not taking any tablets. Yes, you heard right. Somedays there isn’t a wheal in sight and other days it’s a lot worse. I’ve found a definite connection between the outburst and alcohol intake. I just had some white rum over the weekend and I itched all night and the next day. I’ve found that cool showers really work but the nights are terrible. I can’t sleep because I’m scratching my feet/palms/back and any part of my body in contact with the bedclothes.
    I also have a major cavity that needs looking into (two years since I’ve been to the dentist), which one doc hinted may be the cause of this recurring phenomenon. I don’t know; I just gave blood tests today for Serum IgE and TSH, whatever good that might do. I really sympathise with all of you out there. I was looking for a support group for people who have to cope with this horrible, disfiguring condition and I’m glad to have found this blog.
    About antihistamines: all of the antihistamines I’ve taken so far are completely useless without a steroid combination. After being sternly warned off steroids by a doctor I saw last month, I decide to keep off them for good.
    I’ll let you know what this new doc determines from my tests, but I know, as you all do, that these dreadful wheals have a mind of their own. Please keep writing; people like us need all the support and commiseration we can get. Thanks.

  51. Judy says:

    Wow! I’m a pathologist with CIU, and I wish you all much luck. I think the variety of experiences posted on this site reinforce how different the causes can be. It is important to find a doc that is sympathetic and will listen and stick with helping you find a solution. My hives look adrenergic (white halos around the pink spots), athough I handle stress well emotionally (apparently it comes out physically). Antihistamines actually make mine look worse (but itch less, although I’ve become somewhat tolerant of the itching). In addition to NSAIDS, hydrocodone makes them MUCH WORSE. There is also an association with reflux and esophageal spasms. And I think ephedra or anything which acts like ephedra or adrenaline brings them on (I broke out in my allergists’s office after a breathing treatment while being tested for asthma). Allergy tests were all negative. I’m beginning to suspect an autonomic nervous system dysfunction, maybe a varient of mitral valve prolapse syndrome. At this point I’m more frustrated with not being to take NSAIDS, as the hisves are otherwise in remission (I’m using a lot of the supplements previously mentioned – for other reasons, but maybe that’s why my hives are better!). Does anyone with the NSAID sensitivity have any experience with COX 2 inhibitors? And do any of you have mitral valve prolapse?

  52. Jules says:

    Thank you very much for not trying to sell anything! I have been living…living??? with chronic urticaria/angioedema for 27 years. I have tried almost everything you could mention. I just had one of my worst flares in 10 years. I am on a low dosage of Prednsione to calm it down. It has truly changed my life in ways I never thought were possible. I am completely disabled by them. I get them on my feet so much that i can’t walk most days. I won’t go on and on about what I can’t do because you all know about it. I haven’t heard of this new drug. My doc has prescribed Gastrocrom 4 times a day. Has anyone tried this? I think I will try some of these vitamins again and the apple cider vinegar. This is the best site I have been on and I so appreciate it. I also meditate.

  53. LB says:

    I am so happy to find this site, hoping someone out there might be able to help…I’m a 41-year-old otherwise healthy breastfeeding female with diagnosed CIU for over 10 years. Also have pressure urticaria, bad headaches, double vision (lasting 6 months). I’ve tried all the drugs listed in other comments, both over the counter and prescribed, including a nasty prednisone session that i’m convinced caused me to have labour complications. Long story short I was “free” for years, but now 2 children later, have relapsed 6 weeks after the birth of the third. Had my first angioedema (lip) in years and now taking 5 mg of cetirine hydrochloride (aka Reactine in Canada, in the US it’s Zyrtec) every other day – keeping it low due to the breastfeeding. Don’t know if it’s stress-related because logically I would have broken out many times over the last few years, but didn’t. Does anyone know what are implications for breastfeeding? Has anyone gained weight using Reactine/Zyrtec? Any non-drug related solutions to offer? Thank you kindly.

  54. Jane says:

    some very interesting comments. I am in my 10th year of suffering from CIU. I have tried everything. Sometimes it’s good sometimes it’s bad. I am finding my body is becoming imune to things that used to work. I can’t take Ibrofen as my face swells up. I did try R1 blocker and R2 blockers together and they did work but they don’t know. I am on increased vitamin D to see if that works now. Let me know when there is a cure? I have been to three specialists, 5 docotrs, 5 naturopaths and one Kineasiologist to no avail!

  55. Sheila Moore says:

    I have had what appears to be CIU for 2.5 years now, often over 80% of my body, and added angioedema about 8 months ago. Zyzal did not work for me, nor did Hydroxizine. I do take Zyrtec every day for regular allergies. The best drug to manage symptoms that I have found is Dapsone, which was originally invented for leprosy but does wonders for many cases of CIU. Today met with an allergist who really knows his hives. Have had test for H Pylori bacteria, which can cause hives, and also for elevated thyroid antibodies, which can also be a cause. Now I am slated for blood tests for other immune causes, hereditary angioedema, and a full blood panel including a panel specifically for chronic indiopathic urticaria. Wish me luck!

  56. Robert Keenan, MD says:

    I am a physician. My first wife had Chronic Idiopathic Urticaria (CIU). It drove her nuts and made me feel impotent because every prescription I tried to treat her with did absolutely nothing. This went on for several months. She was beside herself. About that time, I decided to take her on vacation to lift her spirits. Because she was fair skinned and worried about burning in the Florida sun, we both went to the tanning booth 3 or 4 days in a row. For me, it readied me for the Florida sun. For her, her urticaria disappeared once and for all, never to return. You don’t have to kick me in the head twice for me to understand something that is as plain as the big nose on my face.

    In my practice over the years, I have seen and treated a great many patients who complained about having CIU. I told them all the same thing: Go to the tanning salon 4 days in a row for a 30 minute session and tan. Hopefully, you will get a little burned. A little red skin is the key to a successful treatment and this is a lot easier to suffer through than CIU. I never charged any patient for this office visit. In every instance, the patient’s CIU disappeared once and for all.

    Tanning is, in essence, a cheap form of phototherapy for the skin. The slight burn from the tanning lights, in ways I will not go into here, drastically alters the underlying physiological processes of the skin. With this change, the processes that govern CIU is altered and the patient is “Cured”.

    Try it, you’ll see! And when tanning helps you, pass this advice on to every other distressed person afflicted with CIU you should meet.

    1. Tanya says:

      My daughter is 12 and is in her second round of CIU. She is currently taking 2 Zyrtec and 400 mg of tagamet twice a day and still breaks out almost daily to some degree or another. I am going to start her today on the vitamin regimen above but is 4 days of tanning sessions safe for her?

  57. Lyndon says:

    Dr Keenan, Thanks for sharing your experience. A few tanning sessions are cheap and easy enough that I’m sure anyone struggling with CIU would be willing to give them a chance. I’ve read a lot about Vitamin D deficiencies as related to CIU and take additional Vitamin D daily. That would certainly explain a lot. I can tell you that in the past getting my scalp sun exposure has caused my psoriasis to disappear for a few weeks. Will definitely give it a shot!

  58. Robin says:

    Hi, all of this information is very helpful and as was said everyone is different and what might help one may not help another. I have had CIU for 17 years. Yes, and I am fed up and sick & tired of being sick & tired. I have tried everything more than twice on different ocassions. I have just been approved for Xolair shots, in which I will receive next week hopefully. If any one is interested and has tried everything under the Sun, Cyclosporine, Xyzal, Plaquenil, or known as Hydroxychloroquine, Clarinex, prednisone, and any other meds that has been mentioned. Go see Dr. Patricia Lugar @ http://www.DukeHealth.org I know that Xolair is very expensive, but there is ways to work with that situation where you can afford it. I understand that Xolair has a 99.9% success rate for those with CIU. I will keep everyone updated with the results. Thank you.

  59. Gloria S. says:

    How can I contact you directly? My fiancé is suffering from severe chronic hives. Although he has been suffering with a mild case for over 15 years, they have never been this severe. He was just in the hospital for a few days; he has had to miss work and cannot even find peace during the night, as he itches uncontrollably. His spirit is broken. I know that you have found some natural remedies that have proven effective. You also know what it is like to live/have lived with chronic hives. If you could share your experience/natural treatment with him, I would truly appreciate it and will compensate you for your time. God bless.

    1. Lyndon says:

      Gloria,

      Thanks for sharing your story. I know how incredibly frustrating it can be. I’m willing to share anything I can with others. I’m not sure that there is anything I can add beyond what I’ve put in the initial post and my followup posts at a blog I started for CIU: http://hivesrelief.wordpress.com/

      If there are specific questions you have, I’d be glad to try to answer them, but I’m not a doctor and every person’s experience with CIU is very different.

      Recently, a MD commented on my blog post about his patients recovery with CIU after 4 consecutive days of 30 minute tanning treatments. Something about a mild/moderate sunburn seemed to cure their CIU. I’m not endorsing it, but I am curious. Currently, my CIU is dormant or controlled by the vitamin regimine and a Zyrtec a day that I described in my blog post. Should it flare up, I will definitely try the tanning option.

      I certainly don’t want any compensation for anything.

      Best wishes

  60. Nicola says:

    Finding this post is a God-send! I’m not alone! I’ve had urticaria for three years. Just recently, like yesterday, I suffered a massive breakout of hives including swollen throat and lips. Where urticaria is kind enough to leave my face alone, yesterday, it was all over my neck and lower half of my face. It was awful. I’ve seen two allergists in the Seattle area who’s solution to my urticaria was one tablet of hydroxizine. Clearly, that didn’t scratch the surface. Unfortunately, my dear GP, while great at all other things, struggles with finding the right treatment for my urticaria. It wasn’t until yesterday when I saw a different doc with my urgent need that I got a new regime. He really understood what my problem was and prescribed me zyrtec, zantac and doxipine. Odd to think zantac and doxipine would do anything for hives but it oddly does. I’m waiting to see if it worked. I had a cortisone shot yesterday because my problem was so bad and I think it’s still keeping the hives at bay. I’m just glad to see someone else is out there.

  61. Clare N says:

    My chronic hives & angioedema have just come back after several years off. I’ve been looking into the link to salicylates. If your hives respond when you take aspirin (salicylate based medicine) then I seriously suggest you check out what’s on line about salicylate containing foods – there are heaps of ‘healthy’ foods that have them in. Here’s a link that you might find helpful: http://www.sswahs.nsw.gov.au/rpa/allergy/research/salicylatesinfoods.pdf

  62. Susan says:

    I can’t believe what I’m reading, and in between typing I’m scratching everything. I’ts hard to focus but I just want to say this all started for me in Jan 2001 and just when I have given up on life itself I found this site. I’m missing work again Monday to go to my doc and ask for this Xyzal. I have to get some insant relief so I can think, then I can start some other thingsI just read. I don’t have words for the way I feel right now knowing I’m not the only one and I’m not crazy this is real, and not my fault. Thank you all.

  63. Alan, Ireland says:

    Hi Lyndon and everyone,

    I have been suffering from CIU since I was 10 years old so formore th an 25 years now. It has been alot worse in the last few years. I can link alot of my CIU to major life events and stressful times but usually there is no explanation. For the first 15 years, I had hives every day but not as bad as they are now.

    I have been to every type of doctor, dermatologist and homeopath in several different countries over 25 years. I have tried cyclosporin, piriton and every type of available antihistamine, singular and plaquenil, cortizone creams and other topical steroids. once a bout of hives starts, it is almost impossible to get it under control. I have had two breaks from the hives – once between 2004 and 2006 and between 2008 and 2011 I was hive free (after a course of homeopathy) but the hives came back in december 2011 and have been there every day since. always worse in the evening. i find that running at the gym and steam room a bit helpful, but not for long.

    I was prescribed singular and plaquenil about one month ago but this seems to have made the hives worse so i have stopped taking them. I found this forum and it is the first time i feel that i am talking to people who understand what its like to live with this day in day out with no possibility of a cure. and nobody is trying to sell anything. so after reading all the contributions, i have started taking the following every day:-

    one rinozal (generic zyzal) and one zantac in the morning and the same again in the evening. 3 omega 3 tablets per day, one vitamin c and one vitamin d and one l-lysene. I am nervous about the apple cider vinegar becuase when i was taking singular i tried it and it seemed to make things worse. i might try it again but not for the moment.

    I am only doing this for one week but my hives do seem to be a little more under control than they were. i still have them all over my body but they dont seem as big or as itchy. to be honest, i’m scard to even hope that this might work (as i am completely out of ideas) but it is at least really comforting to be able to connect with people who have suffered with this for as long as i have. at least i dont feel so alone with this. i’m lucky that my wife and family are understanding.

    for anyone suffering from this, i completely understand their feelings and if i ever win the lottery i will be spending huge money on research for a cure for the awful CIU!!! i would love to hear any feedback you may have and i will keep you posted on my progress with the new regime of vitamins and antihistamines. alan

  64. Makenna says:

    Im a 14 year old girl that has now been dealing with this for 6 months. No medicine has helped besides prednisone but even now my body is starting to become immune to it and its not helping as well. I’v been hospitalized 3 times and have had to take an EPI 5 times. I’v been in and out of the ER this whole 6 months. All I want is answers. I’m tired of dealing with it and fighting. Im in a gamble that involves my life yet I never signed up for it. Theres some days when I can’t even move. My skin is now so sensitive that if I scratch I bleed. I am not allowed and lotion or cream because it makes it even worse. My family has taken me all the way to the St. Louis Children’s hospital and I left there with just as much answers as I walked in with. Nothing. I feel like I’m in a losing battle and I’m tired of fighting. If anyone has any suggestions or anything that has helped them please tell me. I have to get off these steroids. They have even tried giving me the medicine Cyclosporin which only caused them to worsen. I’m just praying for answers that I need to get better and for everyone else to get better as well. I know that it is not just me that are tired of the hives and all of the pain. I wish everyone the best.

    1. ES says:

      I’ve had a 100% relief after a few accupanture sessions and changing the diet at the same time.

  65. daveidaho67 says:

    I am 45 year old male dealing with chronic idiopathic urticaria for at least 15 years. On my good days I have at least one hive somewhere. I have seen so many doctors and have so many friends and family try to “cure me”. I am my current regime is levocetirizine 5mg am/pm (generic xyzal) from my local pharmacy here in Idaho, singulair pm, and ranitidine 300mg pm. I take fish oil am/pm and a multi vitamin designed for weight lifting that has massive amounts of vitamins in it. My allergist also has me on weekly immunotherapy. I think the shots make it worse but I am sticking it out.
    Life with this disease sucks, I am so sorry to hear this happens to so many others. I haven’t ever met anyone else with this affliction, Sometimes I look like a real monster, and wonder what I could have done to keep it from happening. I sometimes wish I could just peel off all my skin and grow back new healthy skin 😉 Tanning helps me sometimes but not always, I have found during a vicious 4 or 5 day outbreak, with about 60%-70% of my body in hives, if I drink a lot of vodka and take a long warm shower, I can get relief for about 10 to 48 hours. My wife doesn’t like it much when I do it, but sometimes I just need a day of two off. I am glad I found this site, I got my shots today and will be breaking out bad for the rest of the day.

    1. Ellen Marian says:

      allegra 180mg 2 times a day plus zantec 150 mg 2 times a day has put me in control of my urticartia… See an allergist religiously and stay out of the heat period. Been good for months!

  66. Nichola says:

    I’ve been suffering for a few months now and on this weekend got desperate as I awoke covered from head to toe in welts and they were also in my throat. I spent an hour on the floor sobbing, having reached the end of my tether. Then I spent the next few hours on the internet looking for something new that could help me. I have been taking Zyrtec and Zantac with a low dose steroid. The Zyrtec and Zantac do nothing for me. The steroid helps, but when I reduce the dose, I flare up again. Anyway, on the weekend I came across a book by Kate Andrews, a long time CIU sufferer who swears by Apple Cider Vinegar and other natural supplements. I went out immediately and bought up big! Since Saturday, I have been taking ACV 3 times per day (2 tsps in organic apple juice), Vitamin D3, Vitamin C, Vitamin E. I have cut out all white flour and gluten from my diet and even now it’s only Monday, my breakouts are the best they’ve been in months. This morning was only my hands and a little on my feet. I feel on top of the world. I’m going to reduce my steroid again from today from 1 to 1/2 and see if the improvement continues, but I have to say in only two days, I’m feeling better than I have in months!

  67. sunny sun says:

    Hi Fellow Sufferers, I’ve had chronic hives every single day for about 6 years en-counting. I’d like to say how grateful I am to find this webby and find solace in reading your own experiences. I am going to start on the vitamins methods tonight after I purchase them. I’m currently on Xyzal for a couple of years and am going crazy ever since its starting to wear off the effects on me. At times, I really think that life is not worth living anymore yet cannot find the courage to end my life. So ima’ continue to try to find something that works and hope that it won’t wear off before death comes knowing on my door.

  68. tasha says:

    Acupuncture did not help my chronic idiopathic urticaria at all. I even worked really hard on “acceptance” around all the herbs she prescribed and sessions we had–trying to accept that something in my body isn’t happy, which according to Chinese medicine, is the liver. I really stuck in there for months and months, with no relief. I started taking Xyzal four days ago, 2x/day. I haven’t seen much of a change. My allergist told me our last appt that I really just need to get “zen” with my hives. I wanted to get zen with his face. I know what he’s getting at, but there’s still a part of me that will not accept that I will have these for the rest of my life!

  69. Sunny Sun says:

    May i know how long did you all take the vitamin combo before you can see some result? I just started yesterday. Thanks alot. God bless us all.

  70. Cindy says:

    I have suffer with chronic erticaria off and on for years. From 5-17 and then they went away until I was 35. Then they came back with a vingence! I was diagnosed with Hachimoto’s thyrioditus. I finally fôund a doctor that said the problem is yoûr thyroid and it is producing antibodies and your body is attacking itself. We are going to shut off your thyroid with a drug called propylthiouracil (PTU) and give yôu enough synthroid and cytomel to fully replace your need as if you have no thyroid. I was then, aftèr a while, able to ween off all the antihystimnes.

    I was good with no outbreaks for 10 years so I asked my doc if I could go off the PTU and he said I could give it at try. 2 months later I have full blown erticaria again. I am back on the PTU, and finally after probably 3 months of around the clock antihystimnes I am hive free again and am weening off them. This has convinced me that this really is a thyroid issue. I went to acupuncture and herbalist, I cut out sugàr and saw allergiest. I saw therapists. Nothing else has worked. Get your thyroid checked and get your antibodies checked. And good luck!

  71. Natalia says:

    Hello, everyone! I started having hives and angioedema for 2.5 months now and I am tired already. I don’t know how to live with it. It seems that almost no drugs really help me. I had kenalog shot 2 weeks ago and my hives are back already! I really don’t know what to do. I have been mostly a healthy eater. Don’t drink soda or alcohol, cook at home, yet I have massive hives. I am taking hydroxyzine 10mg at night and allegra 60 twice a day. I know that I have been vitamin d deficient for a while, so I decided to go back on the supplement and add those suggested by the previous posts. I will let you know of the results.

  72. Cindy says:

    I stand by my comment above on June 19th of 2013. This is due to my thyroid. If you haven’t had your thyroid check including your antibodies, do it!-)

  73. Hello Natalie – don’t give up – it will get better – I suffered bouts of horrific urticaria for about 18 months which then led into agonising polimyalgia – possibly linked – but … I am free at last now – I took different antehystamine until I found the one that helped most – benadryl – prednisolone was prescribed for the worst bouts and later again for the polimyalgia which helped as well but am now down to 3mgs only of that. It really is a dreadful thing to suffer – I am an author of ‘Feel Good Fiction’ – can you believe! And I used to go to my events in enormous dark glasses covering most of my face – you can imagine how odd this looked inside in wintertime! But I used to start off saying ‘ I apologise for the dk glasses but I have an eye problem’ hoping they couldn’t see too much of my horrible swollen face. The whole awful saga stripped me of confidence but I learnt to live with it until it finally went. I still only use pure products on my face – the french ‘ Avene’ is excellent and not expensive – Clinique’s ante redness range are also good. I do hope this info helps even if just a little – all my thoughts go out to everybody suffering this horrific complaint. With very best wishes from Ginny Vere Nicoll

  74. PS – Nobody seems able to tell me where this condition comes from either – just completely ‘out of the blue’ in my case – with hindsight I do think that ‘clean’ sensible eating and drinking helps (am sure that I’m allergic to certain wines for instance) also definitely stress plays a large part – the more agitated I became the worse the condition. As an author my ‘feel good fiction’ writing helped as I escaped into another world. So I was lucky with that – but actually learning to live with the wretched thing and go about your everyday life is extremely difficult. Words of comfort – it will go – albeit eventually and I’ve never heard anybody say different either in people who have suffered or in the medical world. Anyway I really feel for everybody as it’s an horrific predicament to deal with – so good luck – and fix onto the light at the end of the tunnel! All goos wishes and thoughts again – Ginny Vere Nicoll

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