Chronic Idiopathic Urticaria

Hello! I'm new here, i'm 19 and have suffered from urticaria since i was aged 12/13 so probably around 7 years now. I was referred to allergy clinic a month or two after initially going to the GP. All came back fine. Full blood count done on numerous occasions and all came back good apart from vitamin D in which i am insufficient apparently. Was then referred to a dermatologist who put me on a drug he shouldn't have done i don't believe. The medication he put me on was Cyclosporin which is normally given to cancer and transplant patients and i was only 15/16 at the time of this. This did nothing for me other than remove my immune system. (i think he said about maybe when my immune system rebuilds i may not have CIU anymore.) Anyway i had then relocated so a new GP. I felt as though someone finally had an idea of what i was going through. And what i needed (medication wise.) Over the counter antihistamines did nothing so was eventually prescribed Fexofenadine by the new doctor. This seemed to help the chronic itching (which was wonderful) but the swelling and the Urticaria it's self would still appear. Fast forward a year (so age 17 ish now) i decided to go on the Contraceptive pill. Suddenly my urticaria disappeared. I was shocked to say the least after so many years struggling with it. I thought so after all this time maybe it is a hormone thing. My urticaria would only flare up every now and then but i mean really rarely for at least a year. But more recently withing the last 7/8 months ive noticed my Urticaria is starting to flare up more often and is occurring nearly every month (particularly when i have 'my week off' the pill) but even during taking it its still flaring up. I was wondering if any other women have experienced this (any of it at all.) and if so what works for you and any diagnoses you'd be given. Any response would be great. Thank you Paige :)

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  • Hi paige. I was surprised to see your heading because I Had the exact same thing and I hadn't seen anyone else with it. It's strange because I used to have bouts of it that lasted 4/5 years until it left my system (medication became no use after a while) but it would lay dormant in my system for 7 years before coming back. Then same cycle would happen. Over the counter stuff worked initially then I had the stronger stuff then stronger until at one point I ended up in hospital because my throat closed up. Then the cyclosporin that you mentioned was offered to me, but you're right I think that is a risky tablet and at the time (in 2010) it was being tried for CIU. Somehow after my stint in hospital and the adrenaline they pumped in me, the CIU seemed to leave my system. This was 7 years ago. Now technically I'm due for another bout if my theory is correct but as yet I haven't . But all the meds you mention are all the ones I took and I ended up with an epi pen to be safe because nothing worked. It's a horrendous thing to have to go through and mine started when I was around 15, and now I'm 41. My theory on the condition is that once it's in your system it literally has to work itself out. In my experience anyway. I never had any answers when I had it flare up and would have to realise for myself what aggravated it. Hormones were a factor for me and think and stress also. Sorry I can't help more but I'm here if you need to chat and if I think of anything else I'll post to you x

  • Thank you :) it's gotten to a point where all I want is an answer for it haha! Hopefully one day we will both have clarity :) x

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