First of all I would really like to thank you (and especially prof. dr. Maurer) for all the important work that has been done in the field of Urticaria (and hopefully is upcoming in the near future). As far as I can judge, you are THE world leading research team on Urticaria; a team that is very active in finding new treatments for this horrifying disease.
I’m a university educated Dutch male who is suffering from Cholinergic Urticaria (without angioedema) for approximately 10 years. It started in the gym when I worked out and was about 19 years of age, and has developed progressive ever since. About a year ago the attacks became very severe, and I even had to visit the first aid of a local hospital a couple times.
Because of these intense attacks I visited a dermatologist (Phd.), who diagnosed my skin problems as chronic cholinergic urticaria, and prescribed me desloratadine 4 times 5 mg a day, and montelukast 10 mg twice a day. As a result of this medication the attacks became less severe, at least when I’m using the computer or watch TV, but I still can’t walk around the block, go shopping, exercise, or take a hot shower without an urticaria outbreak on my skin (arms, trunk, head, feet, etc.).
Currently I’m (also) being treated with Xolair (300 ml every 4 weeks), but although it seems to help a little bit, my urticaria symptoms are still there. In short desloratadine, montelukast and Xolair seem to be helpful to some extent, but at the same time there is no ‘real’ relief in symptoms. As a consequence I’m feeling disabled, because I can’t engage in all sorts of social activities, can’t go out and dance, can’t wear thick clothes, can’t walk around the block, can’t have a regular job, can’t climb high stairs, can’t exercise and also have to watch changes in environmental temperature.
I’m planning on visiting my dermatologist within two months to discuss the possible use of Vagantin (http://www.ncbi.nlm.nih.gov/pubmed/25571938). I’m not sure what to expect, but in my situation it at least seems worth a try.
Having said all this I would kindly like to ask a couple questions:
a) What (possible) medical conclusions can be derived from the fact that (the combination of) Desloratadine, Montelukast and Xolair aren’t giving (enough) symptom relief in my case?
b) What would (probably) be your medical advice in my situation? Vagantin? Cyclosporine? Propanol? Further medical examination, like skin or blood tests (which tests/markers)?
c) Is there currently any research going on specifically aimed at cholinergic urticaria?
d) Can I – being from the Netherlands – visit your medical clinic? If so, what are the estimated costs if I would like to be examined by you as urticaria specialists?
e) Would you appreciate a (global) crowdfunding action to raise funds for (further) research into the pathophysiology cholinergic urticaria?
Moreover: would it be a good idea to open up an English section in this forum?
Really hope to hear from you.
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Friendly regards, David