Rejected for Xeljanz?

Hello everyone,

I've read of great things on here about Xeljanz, which gave me hope for a cure. I made an appointment with a derm at SFGH under my insurance (and having heard that they alternate doctors with UCSF). Unfortunately my derm wouldn't fill out the Xelsource form for me because it's not FDA approved for Alopecia.

He examined my hair and thought I just wasn't losing enough to take the risks of the drug. I've been losing hair from my scalp, eyebrows, eyelashes, AND nose since mid-January of this year. It's diffuse as opposed to patches, so it's hard for people to tell. Additionally, my hair grows WHILE I lose it but my hair can't keep up with the rate of the loss. He recommended that I just try to de-stress, maybe try Rogaine, and come back for a check-up in 3 months :( I felt so defeated when I heard Xeljanz wasn't recommended for me; I had to hold back tears in the office.

What I had planned for was to stop my Alopecia as early as possible. Is it really a better idea to wait around for 3 more months? Should I keep searching for another derm who'll prescribe Xeljanz for me?

I'm so tired of seeing hair everywhere. I'm not working at the moment because I'm running from doctor to doctor. I've been to more doctor appointments in the past 6 months than my whole life. Like many of you, I just want to move on and have as normal of my old life back.. I would appreciate any guidance from members on here. TIA.

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Permalink Reply by JHen on July 20, 2016 at 9:29am

You should seek a Rheumatologist. I do not know the extent of your loss of hair, but it can be very frustrating dealing with doctors who are unwilling to help, when it is not them going through the tramatic event. They often just brush it off as if it is no big deal, meanwhile it can take weeks to get another appointment.

I would try and make an appointment with a doctor who is familiar with Xeljanz, and possibly try and ask ahead of time if they are open to prescribing it off label for Alopecia. Keep pushing, it will work out. The best part is that Pfizer does not car why you are taking Xeljanz, they only care that it is working. If its working and you apply for the Xelsource financial aid, they will approve you once they review your information.  Good luck. BTW. If you find a Rheumatologist, they often times have samples of Xeljanz that they can give you to speed up the process, while you wait for the mess with insurance and getting coverage.  

Permalink Reply by strawberry on July 21, 2016 at 2:01am

Hi Justin, thank you for your response and your kind support.

By seeking out a Rheumatologist, do you mean that some are willing to diagnose me with "RA" in order to prescribe Xeljanz off label for Alopecia? I've seen people on here going either route, for RA or Alopecia and I wasn't sure which would be better in the long run.

I read your other comment on here that Rheumatologists are more familiar with the drug than dermatologists, which would be a comfort to know since those side effects can sound scary. Expense is another concern since I don't know how long Xelsource would provide financial aid for - is there a difference if I put down RA or Alopecia?

Permalink Reply by JHen on July 21, 2016 at 1:21pm

Your doctor will not give you a diagnosis of RA if you have Alopecia. Pfizer does not care why you are taking the drug, they will cover you even if it is for Alopecia. The reason i say to seek out a Rheumatologist is for the simple fact that they are much more comfortable prescribing these types of drugs. Dermatologist are not all familiar, and quick to dismiss Alopecia as just a cosmetic issue, or will happily prescribe you Prednisone ( Poison ) or inject your scalp to death with steroids. 

Permalink Reply by strawberry on July 21, 2016 at 4:20pm

Oh, I get it now. Thank you.

Permalink Reply by jenrey85 on November 5, 2017 at 8:40am

Thank you for the feedback. I'm scheduled for a dermatologist appointment soon in hopes that they would be willing to prescribe Xeljanz, but feeling pessimistic. I now have a Plan B if I can't get through to any dermatologists. I will be sure to update everyone on my success. 

Permalink Reply by Stars-r-Aligned on July 24, 2016 at 1:51pm
I have diffuse thinning as well..alot of the people who answered seemed to give great replies..

Also what were the risks with xeljanz?

My diffuse thinning started In April of this year and my hair is not growing..at all .
Permalink Reply by strawberry on July 24, 2016 at 7:21pm

Are you only losing hair from your scalp?

The serious risks for Xeljanz is that it could open your immune system to developing infections or even cancer. Minor side effects would be gaining weight (seems like 10-20lbs), acne, colds, sore throat, fever, and higher cholesterol. These minor side effects can be avoided or treated with good diet, exercise, sleep, and being careful not to catch colds from others though. Certain lucky individuals report having zero symptoms.

I really wish something would be FDA approved for Alopecia already. I'm constantly warned about the risks of Xeljanz so I feel conflicted about whether I want to go on it or not. I'm giving the AIP diet a shot as of right now.

Permalink Reply by DJ88 on July 25, 2016 at 3:20am

I found this on google after reading your post strawberry. I don't know if it pertains to us (Alopians).  But in this article I found it says Xeljanz doesn't increase risk for cancer.

here it is:

http://www.medpagetoday.com/rheumatology/arthritis/51206

They do need to approve this already. It's been like 2 years already.

Permalink Reply by strawberry on July 25, 2016 at 4:23pm

Thanks for the link, DJ88. If you started a Xeljanz petition for FDA approval, I'd gladly sign it.

Permalink Reply by Tomy Pereira on July 25, 2016 at 10:25pm

Is friend, the way same is expect.

Permalink Reply by Xeljanzmiracle on July 31, 2016 at 3:22am
Forget General Hospital. Go see Dr. North a the UCSF Dermatology Clinic at 1701 Divisadero. If you have lost eyebrows and eyelashes you are headed towards AU (alopecia universal is) and destressing your life isn't going to help. You have an autoimmune form of alopecia. Call Carol,the Office Supervisor there, and tell her I recommended you. You ate going to need a referral from your primary care provider also. AskvCarol to put you in on a Thursday,vwhen Dr. North is there. Call/text me at (510) 613-3459 and I will give you Carol's office number. Valeri
Permalink Reply by jags on July 31, 2016 at 9:41am

Hello Strawberry - We have pretty much encountered what you are encountering. Dermatologists who refuse to prescribe Xeljanz just because it is not FDA approved and downplaying this disorder as just cosmetic. As a healthcare consumer, you have the right to a second opinion and I would highly recommend you search for Dermatologists authorized by your insurance company, confirm by calling their office that they would be willing to prescribe you Xeljanz before you meet them face-to-face. There are doctors / researchers who are pioneers in this area and I would also recommend that you reach out them. Also, reach out to your local politicians, FDA and make them aware of the agony you are going through. I hope this helps.

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