Chronic hives (uticaria)

Thank you. My Xolair is controlled I’d say 90% of the time. I’ve looked at the cyclosporine and that’s a pretty intense drug that’s used for transplant people. I now have a red light pad for some other purpose, and next time I have an outbreak I’m going ot use that. It’s got some good research behind it.

I have had chronic urticaria for 15 years on and off. Xolair did not work and now my friends they are trying me on dupixent And they have also told me that this may not be urticaria that might be some form of eczema caused by M Gus, a certain protein found in my blood. I have had this attack now for six months and I’m extremely depressed from it. Do any of you take anything for the depression associated with the constant itching?

Not sure who told you it may not be uticara, but mine was diagnosed through a little biopsy. It’s really awful to have it nonstop. I hope you can go to a doctor to get a definite diagnosis. Ice packs can help with the constant itching - lots of ice packs. A doctor can also possibly give you a short term prescription for prednisone. But again, I think a doctor should be advising. Good luck

I am following a new drug that is awaiting FDA approval - Remibrutinib. Supposedly was to get approval months ago. Otherwise, I am resigned to Xolair which doesn't work and Allegra which doesn't work. Mine is consistent - really brutal 6 week stretches at the same time every year and then goes away. Jan-Feb, May-June, Sept-Oct. Without fail. I overtake Xolair and it still doesn't work. During the Jan-Feb outbreak when it's the worst, I take 1200mg a month with the extra dosages I save up. No change. I have no other advice for anyone, this is debilitating for sure, wish I had something better to offer.

I have a Doctor at University of Florida.Who indicated that due to nerve damage?I have this continual breakout.

My monthy injections are a total of 375 mg, and that’s the most allowed. I have to go to a hospital to get the shots. Guess there’s an option to do at home but I’d be so worried about getting them in the mail.

My used to be cyclical, also, like during the spring. But the doctor ignores that. Now it’s mostly due to compression, like eaing my workout bra or tights on too long.

A new drug, Dupixent, was approved recently and some in another forum are having good luck with it.

Thankfully, during COVID, mine were shipped directly to me. And also thankfully, I insisted on the max dosage after reading a study that was done on Xolair that said 80% of people respond better to larger doses. So I am at 600mg a month. On occasion, I'll miss a couple of injections so therefore I have extra. I use those during the Jan/Feb outbreak and just load up. It still does nothing with 900-1200mg a month. See if they will allow you to inject yourself. It would save time and money (if you don't mind that sort of thing). I've never had trouble with doing it myself. UPS delivers to my door in a very well chilled package and I just put it in the fridge. You just have to ship back the box - they give you a label - drop it off at UPS store and you're good. Genentec is a little difficult to order but it's still only a few minutes a month to call and schedule. They have a thermometer with the meds that will say "OK" so you know it's been chilled properly. I like it, very convenient.
I looked into Dupixent - it seems like Xolair in many ways, so out of exhaustion on all of this, I didn't pursue it. Like you, any heat build up aggravates it terribly. Sitting or laying in bed even - anything that builds up heat will trigger a worse reaction. Plus the time of day - 3p and 7p I start really itching. I have the cream - Triminiclone (sp?) but it doesn't do much either. Better than nothing I suppose.

Hang in there!

Check the inserts that come with your prescriptions. I had hives as a reaction to a prescription med. When I stopped the med, the hives went away.

Try 3 to 4 Allegra a day. Talk with your doctor first. I suffered horrendous hives and welts for almost 5 years. Started taking 3 fexofenadine (Allegra) a day 8 months ago and hives have not returned. I need to add that my hives were caused from heart medications, almost every one on the market. I could not stop some of them. The fexofenadine took care of the histamine reaction I was getting.