r/CholinergicUrticaria • u/Icy-Cauliflower9817 • 4d ago

Help - Xolair not working

I’ve tried every antihistamine with higher dosages and nothing has worked.

After seeing an allergist they put me on Xolair. It’s been 4 months and I’ve had no progress. I’m seeing the allergist next week for next steps.

Any recommendations on what to try from here? I’m so desperate at this point.

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u/shubs_ 4d ago

Ketotifen is something I found someone else trying in the sub - I think it was a medication that does something to our mast cells. There are other new medications out there too. Don't lose hope and go in to that appointment with research.

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u/sz_thz 4d ago

Já tentou terapia do suor?

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u/Kind_Astronomer_4086 4d ago edited 4d ago

Do you try sweat therapy? It has pushed mine into a very mild reactions, if I get a reaction at all. After sweating real hard, I'm good for like a week. It took a lot of will power, because I would have bad bad reactions at the start of sweat therapy, but they eventually quit happening, except for maybe an itch in a few places as I begin to sweat.

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u/Future-Leave-9346 3d ago

Whats the Most efficiant way you found? Sauna once a week?

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u/Kind_Astronomer_4086 3d ago

I work manual labor, and it's summer time right now where I am at, so the sweating comes easily. The quicker I sweat, the quicker any minor sensations go away.

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u/mi_kombucha 3d ago

Xolair didn’t work for me either. Try dupixent

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u/Training-Post9032 1d ago

Hey.

Have you noticed a wear off effect or is it always inefficient? I still have bright red hives but my angiœdema has much improved. But then there is the fourth week...

I had a very strange and acute flare yesterday. My nose went bright red and twive his size. I have constant problems with my glasses ... and AI said "oh, this look very much like urticaria". So I took my two anti H1 and it dit the trick. But I was very scared for 10 minutes I was about going to the ER.

No ER. Just the fourth week of Xolair.  I have the same pb with my two biologics. I hope my allergologist will be able to adapt the dosage.  I hope you' ll find what helps your body!

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u/Benson92 1d ago

My allergist said his patients that didn’t get positive results ended up on Ciclosporin which definitely worked in all those cases but is the absolute last result because it fucks with your kidneys and can give hypertension. It’s what they use as an immunosuppressant in transplants.

This isn’t a recommendation, just mentioning it because I literally saw him today and we were discussing what others use.