Could anyone give me suggestions on doctors that for sure prescribe Xeljanz for treatment? I have tried Dr. King but he is booked until April 2019! I'm so anxious to try Xeljanz because nothing else has seemed to work.

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HI!

Yes go to my doctor at columbia university in NYC he is AMAZING.

Filamer Kabigting "Dr Fil"

ColumbiaDoctors Midtown
51 West 51st Street
New York, NY 10019

212-326-8465

Hi Nicole

ive been so pleased to see your response to xeljanz. A dermatologist I attended a few years ago for DCP refused to monitor my blood count if I were to take the drug as this is unlicenced in the UK. How do they get round thisnin US. ? Do you sign a disclaimer ? 

As the use of Xeljanz in AA is off-label, it is entirely subject to the practitioners discretion whether to do it or not. The perceived wisdom in Europe is that AA is not worth being treated with systemic medication, as it is not a "disease".

I am in Norway, and here they do not even do DCP or SADBE, assuming it is "not worth it" and "too dangerous".  

Another example is the following: all over the world you get high load prednisolon without any comment when you have haemorroides, but when you have AA and you want to take prednisolon, people start yelling about side-effects and how dangerous prednisolon can be... things you never hear else where. It is crazy.

Honestly I would take Xeljanz and let the doc do blood count and not mention Xeljanz whatsoever. The other parameters to be checked on Xeljanz you will find on Donovan's webpage.

Hi Nor 75

My understanding is that in the UK doctors are unable to prescribe as the drug is unlicenced for Alopecia, although is licenced for rheumatoid arthritis in some cases.  There appears to be no discretion at all, very different from th US. The successful responders seem well supported by doctors who advise on dosage and can supplement with steroids etc when growth is slow. Wasn’t sure what you meant by other parameters ?

Hi Mgmck,

No medication is licensed for AA. Not even Anthralin or Kenalog. However, any medication can be prescribed by an MD for any disease. Nowhere in the world will lawmakers interfer in the medical discretion of a doctor.

The point why no one in Europe gets Tofa for AA is a different one: it is not considered to be a (serious) disease requiring treatment. I had a discussion this week with an old-school dermatologist in Oslo. The lady said she does not want to treat any patient with AA (no shots, no topical steroids, no nothing) - because there is no physical discomfort whatsoever immanent to this “condition”. She said medical treatment should be reserved for dermatologic conditions that are painful or at least itching. AA does not qualify for this. She is a leading individual in dermatology. As far as I heard AA is similarly evaluated in the UK, but also in Germany (which was entirely different 40 years)

As long as this is the predominant perceiption, never ever will any doctor in Europe prescribe Xeljanz for AA. It has nothing to do which law - but with medical ethics.

So guys here’s the deal in the US. XELJANZ is a legal FDA approved drug. However at this point, insurance only covers it for RA. so any doc can prescribe it for any condition including alopecia, however insurance does not have to cover it.

My doc fought tirelessly with my insurance who finally agreed to cover it. Shipped me one month at $30/mo then I lost my insurance, got new insurance and the new insurance will not cover it even after doc fighting g for it.

So I’m switching Insurance again in the new year with hopes the new company will cover. But I’m not getting my hopes up. 

If not I really don’t care because I’m perfectly happy to get from beacon. I have stockpiled  about 5 months from beacon to this point.  Will grab another shipment Soon just to be sure I’m covered. 

Hopefully phizer will stop being greedy assholes soon and let people with alopecia use insurance for this med under coverage. 

Hi nor75 and Nicole 

thanks for your replies :-)

Steroid injections and dcp are used in the U.K. to treat AA. Doctors and dermatologists will not prescribe xeljanz  as it’s not licenced, unlike the US, as you say there are legal/ ethical  issues which prevent them from doing so. It’s been so interesting / heartening to read of Nicole’s progress with xeljanz and hopefully this will become licenced in the UK, perhaps once the current clinical trials with aclaris and concert Pfizer etc are concluded.  Meantime people living in the U.K. will need to make difficult decisions about whether to self medicate with  what is in effect an unlicensed drug in the U.K with potentially serious effects.  

Hi Magmck

I can only repeat that steroid injections and DCP are likewise not licensed for AA. There is no reason whatsoever, preventing dermatologists from prescribing Xeljanz for AA, neither in the UK not elsewhere in Europe.

Why do they not do it?

Well, it is the subjective risk-benefit-quotation which is applied very restrictively in Europe. 

For you that means, you might potentially miss a once-in-a-thousand-years chance to get rid of your AA (AU?). This is because, the more time elapses, the less likely you will respond to the few medications, you have quoted, which might be released in a few years. This applies not only for you but to hundreds of thousand of other people suffering from AU right now in Europe. 

There is a strong group within European dermatology which believes AA is not worth being treated. No surprise, none of the trials presently in progress, are done in Europe. There will be strong European resistance against new AA medications (in case one of them will ever make it to the market). 

For all of us it means we have to do something against that.

BTW: It is also dangerous for AA sufferers in the US. Why should a company develope a medication which will potentially never be “licensed” (or simply prescribed) in Europe. This would be commercial nonsense. 

If you trust this doctor and he already helped you several times I think you shouldn’t be scared about what he is prescribing you. It is awful when the doctor you have faith in prescribes you some treatment just to earn some extra money from those pills you will take. I can say I didn’t face this problem since I go to https://cameronmch.com/locations/cameron-urgent-care/. They provide urgent care services and help their patients in time.

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