Therapyresistant cholinergic urticaria with anhidrosis
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! :-)
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