urticaria network e.V. (UNEV)

Urtikaria-Forum für betroffene Patienten
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BeitragVerfasst: 26 Jul 2015, 10:24 
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Registriert: 04 Jul 2015, 16:08
Beiträge: 2
Dear doctors (and assistants),

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. :oops:

Friendly regards, David


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BeitragVerfasst: 10 Aug 2015, 11:57 
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Registriert: 13 Feb 2003, 10:28
Beiträge: 258
Wohnort: Berlin
Dear David,

thank you for your kind words. As I know Dr. Altrichter already has been is in contact with you. I believe you received answers to all of your questions and response to yoru valuable comments and suggestions. If there is any loose ends please let us know. We are very happy to keep in touch with you.

Best wishes,

_________________
PD Dr. med. Frank Siebenhaar
Arzt der Urtikaria-Sprechstunde Berlin
Klinik für Dermatologie, Venerologie und Allergologie
Allergie-Centrum-Charité / ECARF
Charité - Universitätsmedizin Berlin
Charitéplatz 1
D - 10117 Berlin


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BeitragVerfasst: 11 Aug 2015, 18:17 
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Registriert: 04 Jul 2015, 16:08
Beiträge: 2
Dear Dr. Siebenhaar,

You are completely right I have, in the meanwhile, been in (good) contact with Dr. Altrichter and she provided extensive answers to my questions.

Moreover thank you for your offer to provide additional answers to future questions. It might well be possible, that I will ask some new questions in the near future. :roll:

Thanks a lot! 8)

Best wishes, David


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