I have been to every doctor possible and they put me on every antihistamine with no success. My cu appears when I work out, get stressed or anxious and heated.
I have been to two specialist that didn't help me at all. They did skin prick test, ige test, hep b & c, the list goes on but everything came back negative. They both said I had cholinergic urticaria.
I have also tried acupunture, chinese medicine and this helped a little but not enough.
About two months ago I came across a doctor who put me on "cimitidine magicul 800". This helped a great deal but the cu still appeared in some places. I recommend you try this. It has a h1 and h2 blocker, where an antihistamine only has h1 blocker.
I had been researching my condition everyday and I come across a drug called "ketotifen". I only read great reports about this but it's not available in aust and no doctor would write a perscription for me.
Yesterday, I went to another specialist who perscribes this drug. He said if I take it for 4mths it should fix the problem for good. He has about 5 people a week with urticaria come see him, he has a very high success rate. I had to order it from nz and it was $100 for 100 tablets which is a lot cheaper than antihistamines. This specialist had urticaria himself so he understands the frustration that one can have with this condition. He told me I didn't have cholinergic urticaria as this only comes on the stomach and arm area. I get this all over my body.
I will let everyone know how I go on "ketotifen". If I have great results I recommend you all try it.
Hey there, I also have cholinergic urticaria and i've been on zaditen (ketofen fumurate) for the last few years.... Its caused streaky results. Sometimes I am so confident in it I can just live my life, other days I have sever reactions 3-4 times a day. I'm heading to homeopathy in a few weeks to try the natural method out. Hopefully it works out... I'll keep you posted.
Here is my story. There is a happy ending if you care to read through to the end.
I was diagnosed with cholinergic urticaria many years ago. I've had it since I was a teenager. That was an unpleasant time because I had no idea what to do about it. I eventually found that I could keep it completely under control by getting regular exercise (twice a week was enough), as long as I worked up a good sweat. I mainly used an exercise bike, but over the years, I have found that a treadmill is just as good if not better.
That worked well for almost 20 years. The only time I had symptoms was when I couldn't, or chose not to, workout for a couple of weeks or so. It was as though my body was building up reserves of histamine while I wasn't working out. The answer was, as always, to start exercising again.
About two years ago, for no apparent reason, the problem got much much worse very quickly. I started increasing my workout frequencies to try to keep it under control, but I was exercising for 45 minutes to an hour every morning. Eventually, the itching would subside during my workout, but it would take at least 20 minutes to happen, and until then it was like torture. And, less than an hour later, the itching would resume after even a short walk to work. It was as though I had not exercised at all. Very frustrating. I was really worried about my ability to continue working. If you've had bad attacks, you probably know the feeling. I was tired of the neverending itching, and becoming very resentful of the ineffective exercise. My usual remedy wasn't working anymore.
When I was younger, I had seen a few dermatologists, and none of them was very helpful. I had tried several prescription drugs and the only thing they accomplished was making me extremely drowsy. They did not help my condition one iota.
I was given the name of an immunologist who, I understand, was highly recommended. Due to my previous expereinces with specialists, I was doubtful. He told me right off the bat that antihistamines tend to not work very well for c.U. Which I already knew but was glad to hear from a professional. I was pleased that he had another suggestion. The drug is called cyclomen (also called danazol).
I started taking it right away, and within two weeks (it takes a while to have an effect) I could feel a significant improvement. After about one month, the symptoms were so much better, I felt like I was completely back to normal. No itching at all. I even took a break from the regular exercising.
My immunologist told me that the worsening of symptoms had essentially been a flare up, and that it would go away eventually. Over time, I was expected to try to reduce the dosage until I could stop taking it completely. After several months, I tried to reduce the dosage, but felt the problem was returning, so I went back to the original dosage. A few months after that, I tried again, and was able, gradually, to successfully reduce the dosage down to zero.
Now, I still exercise regularly to keep the problem in check, and I am back to normal. For me that means no itching as long as I exercise once or twice a week.
I remember how bad it was, and I feel for anyone still struggling with this problem.
Please get a consultation to see an immunologist and ask him/her about the use of cyclomen (danazol) to treat your c.U. Fortunately, it was covered by my drug plan. Hopefully it would be covered by yours as well.
The capsules I was taking are 200mg each. I can't recall the original dosage, but I think it was one capsule, three times a day. I didn't experience any side effects.
Prior to seeing the immunologist, I did try a naturopathic approach, and while I was hopeful, it did nothing for me. If you are like me, you will need to see for yourself if the naturopathic approach works. For me it did not. If it doesn't work for you either, don't give up! Get a referral to an experienced immunologist.
If you want more information about my situation, please ask. I'm glad to help if I can. I'll bookmark this page and check back occasionally. Good luck to you.