Therapyresistant cholinergic urticaria with anhidrosis

david 29.09.2017 22:51

Unfortunately I've got - therapy resistant - chronic cholinergic urticaria for four years now. In short four years of a living hell, with almost no "quality of life". I can't engage in any sporting or social activities and have to have a airco around all the time. My reactions and anhidrosis/hypohidrosis are that bad that they even trigger intense and debilitating nerve pain in my feet. I've used/using: ceterizine, desloratadine, rupatadine, ranitidine, omalizumab and ciclosporine, but nothing seems to help. Antihistamines make the histamine reactions a little bit more bareable, but dont lower the thresshold of my 'easy' triggers (like some sun exposure, walking, doing household, taking a shower, sexual activities, stress, etc.). My cholinergic urticaria is therapy resistant and doctors dont 'really' know what to do. If my situation doesn't improve in the future, I think I'm gonna end my life one day (at least thats how it feels, knowing that I have to suffer intens for years or decades on a daily basis). From the literature it is known that a certain group of cholinergic urticaria patients do NOT respond to the current treatments, so there is a DESPERATE need for further research and medication (such as IL-5 antibodies). Research focussing on the blood and skin of cholinergic urticaria patients! Despite my deep respect for doctors working on (cholinergic) urticaria with the little resourcea they have, in general it seems to be a money thing: there isn't enough funding for research into cholinergic urticaria (at least in Europe), so therapy resistant patients are left in the dark... In my view research - which quit often focusses e.g. on improving treatment for patients who do react to omalizumab, and which aims to clarify effective/efficient dosis - should ALSO focus on non-responders like therapy resistant cholinergic urticaria patients... maybe this group is commercially less interesting or more difficult, but the suffering and very low QOL of these patients - which are important aspects seen from the the medical perspective to help 'those in need' - should also be taken into considerarion. In short: Europe needs big studies into cholinergic urticaria patients who do not respond to xolair and ciclosporin A.

The close this post in a positive way: thanks for all the important work that is currently undertaken at research institutes across Europe, such as at the Charite Hospital in Germany! :-)

djd 08.02.2020 20:10

Hey David. How are you managing with your CU? I’ve been dealing with it for over 20 years now. It went in to remission for about 10 or 12 years. It came back about 2 years ago. Like you, I don’t sweat like I used to. I used to be very active in the gym. 4 - 5 days a week. Over the years I’ve tried just about every antihistamine without success. The only thing that seems to work for me is sweat therapy. I joined a local gym and sit in the sauna for about 10 minutes until I can break a little sweat. Once I do that I’m able to jump on a treadmill or cross trainer and sweat more. Once I get through this threshold I’m able to workout and be itch free. I have to do sweat therapy at least 3 times a week to be itch free. If you don’t have access to a sauna you can try a steam room or even stand in a hot shower (without water hitting you).

All the best, David

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