I thought after 21 years, I would NEVER find a cure. I was diagnosed after taking two Ibuprofen. It almost killed me, and the lasting effect was hives. I couldn't do anything or go anywhere without being covered in hives. I could no longer wear sundresses, shorts or capris because my legs and arms were ALWAYS covered in hives. I went to bed with them and I woke up with them. I was allergic to everything. I saw more than my share of doctors, even a Hematologist. Nothing worked. I took every prescription, cream, lotion, and shot available, including two cycles of Xolair. Nothing. The stress of itching all day, every day was overwhelming. The swelling it caused in my hands and feet was unbearable. Then one day, I remember having an allergic reaction to Aleve years ago, ending up in the ER where they gave me an IV drip of Pepcid. I thought that was odd. I even mentioned it to my doctor, and he said huh, an H20 inhibitor. Not knowing what he meant by that, it didn't mean anything to me. All these years I continued to suffer with no hope in sight. One day I started thinking about the drip they gave me and while I have been on Prilosec for years due to having Asthma and Acid Reflux, I had never taken Pepcid AC. I had been on Zyrtec for years for my allergies, but it did nothing for my hives. I decided to switch fro Prilosec to Pepcid AC and used it with my Zyrtec instead. After a few days, I couldn't believe my eyes. I had them before on my hands and feet. Now, nothing! I was shocked they were going away. Over time, they continued to disappear. It's been about a year now, and I have not had one hive. I feel as though there are phantom hives on me, when I look, there's nothing there. I am so relieved of the stress of having to deal with it everyday. I know this may not be a cure for anyone, but for me it was a Godsend, because I was at the end of my rope. I take 4 Zyrtec and two Pepcid AC everyday. NO HIVES in almost a year. My doctor was shocked that that combination worked, but since he was at the end of his rope and there was nothing else he could do, I think he was relieved I healed myself. I didn't change my diet, my environment, or anything. Good luck to you all and I hope you find a cure, because I know exactly what hell you are going through. After 21 years, I AM CURED!!!!
Hello
are you still taking the 4 Zyrtec a day?
wendy
Yes, I still take the 4 Zyrtec and 2 Pepcid AC every day. Not one hive since last year.
Hi Rene
My Chronic Urticaria became severe in July 2015. the doctors tried everything...nothing worked until I found a wonderful doctor at Johns Hopkins. She put me slowly on Cyclosporine then added Prednisone until I was hive free..stayed on that dose for a month or so...then very slowly went down and off the Cyclosporine then slowly going off the Prednisone. I have been hive free for over a year now and down to 6mg of Prednisone. I was down to 1mg every other day but I had a small breakout due to a stressful situation so doctor had me go back up to 20 mg then slowly down. The key to Prednisone is going down 1 mg at a time and stay on it for couple of weeks if you are hive free...then go down another 1 mg and so on .
What would happen if you took less Zyrtec......would you breakout?
wendy
Unfortunately, the Zyrtec alone didn't do anything. I have severe allergies and asthma, so I was on the Zyrtec for the allergies, it was the addition of the Pepcid that made the difference for me. I've been on multiple doses of Prednisone for years, that had no affect on my hives. I'm glad you found the solution for you, but long term prednisone has it's side affects as well. The swelling, increased appetite and overall long term use of prednisone is bad enough. I would only take it for ten days at a time, and that was when I had a severe sinus/upper respiratory infection, not for hives. Unfortunately, my hives never went away. I'm allergic to most antibiotics, so that only made the hives worse. If all I had to change was adding two Pepcid to my meds, that was an easy, and cheap fix! I'm glad to have my life again, and all I did was substitute the Pepcid for the Prilosec, so there was nothing new added, just an alternative.
I am so glad to hear about you being hives free. Twenty years is a long time to battle with the everyday itching and everything dealing with hives. I battled with Chronic Urticarial and the everyday itching for about a year before I got mine under control, I hope. I get by with daily Doxepin and occational use of Prednisone and Dapsone.
I am going to look into Zyrtec and Pepcid AC. Thanks for your contribution.
It's worth a try. I've read some of the other forums that some are on Zantac, which is also an H20 inhibitor. I just chose Pepcid since that's what I received as an IV. My allergies are bad enough that I need the 4 Zyrtec a day, I just added the Pepcid instead of the Prilosec. I hope you find a solution to your problem. It can control your life and keep you from enjoying things that others take for granted. I'm happy that I no longer have to talk about them or see them anymore. I just hope and pray that it's a permanent fix. I'm enjoying wearing dresses and shorts again. Good luck to you!!!
Hello Brown
when you need the Prednisone.....how much and how often do you take it? I am now down to 5mg and slowly working back down and hopefully off. However if I start to breakout again in the hives I will probably stay on a very low dose. As long as I have been on the Prednisone I have had no side effects or weight gain. As mentioned on my other post......I was down to 1 mg every other day until I had much stress then the stress brought on the hives 
so needed to go back up.
I'm surprised you were not directed to try an H2RB- e.g., famotidine or ranitidine (I take both) earlier in your treatment. If you look at this website and any professional allergy org and/or current literature about urticarial manage, you'd find most of us are already taking these drugs in various dosages and combinations. I Iist the 9 or 10 meds that I take incl, dosages in other posts. I'm also an RN, now FNP, so I was familiar with all of the drugs classes and, also, taking many b/c I have severe allergic rhinitis. I'm on the max+ of all treatment categories (antihistamine [1st/2nd gen], anti-inflammatory [steroids/Plaquenil], H2RB, montelukast/LTRA, and doxepin/antidepressants [anticholinergic/H2blocking]); it's mainly the prednisone that's helping me and not the 6 doses of Xolair I've taken the last 4 months.
I am glad to hear that you've gotten relieve and/or remission ;-). It gives me hope. I’m on my 9th month w/hives. My allergist says to wait until 6 months of taking Xolair before I assume it’s a failure. Mainly, I'm weaning off of the steroid very slowly but the hives always break out if I rush it or take the dose late. I am also being very strict with keeping a food diary of my eating habits b/c I recently noticed certain foods like fig-based fruit bars, Country Time Lemonade and lemon juice concentrate cause hives. All I can do now is adjust my diet and use of personal hygiene products to avoid allergens/triggers.
Hi Wendy,
My last treatment of Prednisone was almost a month ago. I was weeded down from 20mg. I had averaged being on it every other month. My doctor gave me some good advice: he said for me to take a very low dose any time I started a new outbreak. One problem I have with Prednisone is that it makes me a little stressful. For me thats a side effect. So, I have to be careful while using it.
I've been on every drug you can imagine. I've seen many allergist, even a hematologist because my blood work was also so messed up because of my allergies. Their only solution was to send me to Houston for a full work up and treatment. There is not one drug or combination of drugs that I haven't tried. These hives were cause by two Ibuprofen when I was 30 years old. Between the allergies, which started at 25, then the asthma which started in my late 20's, then I started having allergic reactions to things I had taken for years. My body Is overly sensitive to all medications and I have just the opposite affect on what they should do. I couldn't stand in my front yard and water my grass without breaking out. I live in South Texas and I'm allergic to mesquite, hickory and pecans. Where can you go in Texas and not find these things in everything you eat? I've been allergy tested 4 times, my last round of allergy shots was 4 years. I've done the Xolair injections twice. I've tried every inhaler, nasal spray, over the counter allergy meds, prednisone, depo Medrol (which now I'm allergic to), I have a nebulizer when my asthma gets bad, my last set of shots cured me of 10 allergens, and I developed 12 new ones. It never ends. As long as this combination works for me, I'm not changing anything. I guess everyone is different, you have to find what works for you. I don't want to be on prednisone, because I have a lot of side effects from that. Not good long term. I will keep doing it as long as it works.
Hello Brown
Sounds like we have good doctors. How much Prednisone ( mg ) is very low dose when you have a breakout? And how long does it take for you to go off . Very interesting....you mentioned your side effect is feeling stressful. I have been feeling that as well....feeling anxiety but thought it was due to our daughter going through a difficult time.....maybe it's from Prednisone. All I know is that Prednisone has been a blessing being able to be hive free!! Are you concerned about your bones? Are you taking any Calcium?
thank you for sharing.
Best,
Wendy
Hi Brown
I forgot to mention...my doctor also recommends me to take Allegra.......so I just take it a few times a week just to keep it in my system. It's a anti-histamine. Really works well with hives.
Wendy
I agree, take whatever drug you and your providers think will or does works the best for you. Hopefully, my post did not suggest otherwise since it was not my intention. As you may already know all drugs have 3 names: brand name: Pepcid, generic name: famotidine, and, lastly, a chemical name: N'(aminosulfonyl)-3-[[[2-[(diaminomethylene)amino]-4-thiazolyl]methyl]thio]propanimidamide, which providers almost never use. I use generic and brand names interchangeably as well as a 4th category, mechanism of action [H2RB-a hydrogen receptor-blocker], to discuss medications on this site. My goal on this site is to provide and receive support for chronic intermittent urticaria (CIU).
No 2 patients with CIU or any disease are ever identical; however, the etiology (cause of illness) is generally the same or similar. CIU is a disorder of the immune response, mainly rogue IgE antibodies or abnormal IgE receptors located on specific inflammatory/immune cells. I am also more sensitive to outbreaks of hives/angioedema or itching with exposure to new or even familiar products or allergens; it's common with this illness. I wish you the best and hope you remain hive free.
Hi Wendy,
Yes, I like my doctor because he seems caring, concerned and knowledgeable. 5mg of Prednisone is a low dose for me. I found this out the hard way, but yes Prednisone makes me anxious and stressed out. So, yes the Prednisone will cause anxiety. I am not taking any calcium at this time. I am hoping that my higher dose of Doxepin will keep the hives from coming back. I am glad that the Prednisone is working for you.
Wishing the best for you Wendy
Hello
do you take 5mg Prednisone each day or take 5mg when you break out to stop the hives? You might want to consider trying Allegra when on low dose of Prednisone every now and then. I am now down to 4 mg Prednisone this week so will take Allegra a few times this week just to keep inflammation down. Such a blessing to have these meds to keep us hive free. Eat healthy as well.
have a great day!
wendy
Hi Wendy,
I take 5mg until the rash is gone and then take half that for about a week. I will try the Allegra while on low dose. It's worth a try. Yes these meds are a blessing!!
Thanks!
Good for you,that you are hives free.I have had them for 6. Years,everyday I
They are making my life miserable,I take cetirizine,and they go away,but live me tired and depressed and they came back again,I can’t Handel anymore without no cure this is a very bad situation I am not being happy,because of hives.
Has anyone ever tried an elimination/rotation diet? An allergist put me on one years ago and I was able to get off all meds for a year. Foods are in families and this diet allowed only 1 fruit, 1 veg, and 1 meat per day (all you want) and it couldn't be repeated for 7 days. This eliminated wheat, dairy, sugars, soy, corn, etc, etc. After a few months the body is able to heal itself because it is not being bombarded with sensitivities all the time. The dr. used a glass of water as an analogy. Your body is like a glass; every time you come into contact with an allergen, it's like a drop of water in the glass. When you get so many drops in the glass, it fills up and overflows. This is a reaction whether it's hive, asthma attack or sinus stuff. The goal is to reduce the drops of water (allergens) so the glass (body) does not over flow(react). Food is the most controllable of sensitivities so that's what we went with. It is terribly difficult to do but it works. I felt like a new person after 3 months. After health is sufficiently regained, you start adding back one food at a time and carefully record any reaction, not just typical reactions but nausea or stomach cramps etc. too. It's a lot of work to be so disciplined but it's the only thing that ever worked for me.