Alopecia World
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European patient
Good morning World!
I' am from Greece (Europe) and i'm looking for more answers about alopecia. In my country patients with alopecia are alone...Its difficult to find other people with the same problem (to talk with them)...and its difficult to find a doctor who is specializes in the disease.
My partner of my life T. (39 years old) live with alopecia universalis the last 2,5 years. All began earlier, with the first symptoms in his face, and his head after...
Cortisone (a lot), pharmaceutical creams and lotions do nothing (first + second doctor)
Cyclosporine and other pharmaceutical creams for 1 year give us some hope, but finally T. lost everything....(3 and 4 doctors).
Now we want to have an appointment with another doctor. She is a professor in the University of Athens (dermatology). and ask her "there is a hope?"
I read your experiences, but i need to talk with somebody... I want to help T. and i have a lot of questions.....I read about XELJANZ. Anybody knows if in Europe this treatment has been approved? If you see a light in the tunnel?
Thank you to read me
G.
Replies to This Discussion
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Permalink Reply by hellopeesha on
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Hey Gogo,
I'm also Europe based (Ireland). And i'm also on a journey to find and purchase Xeljanx!
Please feel free to connect with me and we can message?
All the best,
Paul.
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hello I am french xeljanz is not allowed for alopecia in Europe or even in the world he is trying, he is allowed in some autoimmune diseases.
I started xeljanz in March 2018 I bought Turkey in Istanbul because you can buy without prescription at the price of 330 euro a box so it's a budget.
now for two months I take a generic xeljanz Bangladesh from the price of 15 euro the box with 65 euro postage.
I had it analyzed in the laboratory it is identical it is 4.2 mg instead of 5mg
to compensate I take a stamp and more.
I never had a problem with the customs in France.
but I do not know if the Greek customs can block it you can tried.
I have recovered my eyebrows hair and my hair, to boost the regrowth you can combine cortisone if the regrowth is not complete, I know all about these medications if you need do not hesitate to ask me.
I am followed by a dermatologist who knows the medicine but can not prescribe it because it is forbidden the only solution is to get it either by going to Istanbul in Turkey in a pharmacy or by the pharmaceutical company that make the generic but there is a chance that the customs block the package.
if you decide to take xeljanz
.
first thing to do
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Hey Kevin,
I don't think that it not being allowed is the issue? I think it's allowed it's just not officially approved for treating alopecia specifically. But I thought doctors can prescribe off-label treatments where there's evidence they might work.
So for example in my case, the reason I'm not on Xeljanx isn't because my doctor or derm wont prescribe it - it's because it's €1400 per box!
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Hi Gogo
I am Dimitris from Athens (πατριωτάκια)
I sent you i "request friend" in order to attach you my mail.
I have started with tofacitix about 3 months ago...
It is an opportunity to create a network of AU people in Greece.
Br
Dimitris
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Hello!!!
I want to thank you all for your messages :-) You make me smile!
I understand that this "new treatment" is a rough road for patients....and i think it's important to have more information about surveys conducted in the US and Europe. By doing a search on the Internet, I found that the only information is limited to some publications some years ago.
I will contact with you, and i hope for everyone this "life' s test" has come to an end...
For patients and their partners, alopecia is a lonely fight and unfortunately society is the "greatest enemy". That make me furious some times, specially the way people look....
p.s. sorry for my English
I will contact with you soon
All the best,
Gogo.
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