Is anyone else not responding to Xeljanz?

,So I am now at 15 weeks on Xeljanz and have only gotten some diffuse vellus on scalp and sporadic tiny vellus elsewhere.  This is very disheartening after seeing all of the other people who are posting with amazing results in the same or less timeframe.  Don't get me wrong, I am very happy for those who are having such great success,  but I can't help wonder what, if anything, I am doing wrong. Why isn't it working?   I thought maybe others who have not had such great success could chime in and we could see if there are any similarities in our situations that may be causing the slower response.  My doctor has recently added Plaquenil, so maybe that will help.  I am also considering upping the dose to 3 x a day, however, that will cost more so I don't know if that is possible.  Would love to hear from others in the same boat. 

Also, for those who do not have insurance and are having trouble with cost, the discount coupons available on-line for Xeljanz have proven to be very effective in reducing the cost  by up to $1,800.00 depending on the coupon.  All you have to do is print them out and take them to your pharmacy to scan to see which one will provide the greatest discount, and they will apply the discount, saving you a lot of money.  Just throwing it out there!         

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Permalink Reply by lusha22 on June 17, 2015 at 6:30pm
Hi starshine.. I'm on week 10. I started growing lashes about 4 weeks ago, now it seems like everything has stopped:( no growth anywhere else yet. I still have hope though!!
Permalink Reply by Starshine on June 17, 2015 at 9:09pm
At least you have started lashes, that is a good sign. I am also remaining hopeful, but it is getting harder as each day goes by. It is still technically early though. Are you doing or taking anything else besides Xeljanz?
Permalink Reply by DJ88 on June 17, 2015 at 7:18pm

Is xenjanz the only thing your using? I heard some people use Rogaine with it

Permalink Reply by Starshine on June 17, 2015 at 9:12pm
I did use Rogaine before I started Xeljanz but my doctor wanted me to stop when I started xeljanz. It might be worth a try.
Permalink Reply by DJ88 on June 18, 2015 at 7:31pm

I think that's what ADML. But you may want to ask your doctor first. I dont really know to much Xenjanz as I never used it or even seen it in before. Good luck with this though. Im thinking it has something to do with the dosage, maybe.

Permalink Reply by Kasten on June 18, 2015 at 4:29pm

Hi Starshine,

So I started on Xeljanz last August at 5mg/twice daily. I have been AU for over 15 yrs. In October, I switched to 15mg/day and was having some positive results: I had vellus growth all over my head, growth of my eyelashes, and had some vellus growth on my eyebrows and body. In mid-December, I had to stop taking Xeljanz since my insurance company stopped covering it and the growth stopped. In February, I was able to get back on Xeljanz but only at 5mg/twice daily. Since February (so about 5 months), I have had some terminal growth of my eyebrows (less than 25 percent on each brow), vellus growth of my facial hair (with some terminal), and some terminal body hair scattered all over my body and arms. Otherwise, the vellus growth that was on my head previously hasn't grown at all; in fact, I feel like it is no longer there. I am really disappointed like you because I am so happy that others have had success but am sad that my story hasn't been as positive. I am going to keep at the Xeljanz because I may need more time, and my doctor has thought about adding cortisone injections to my treatment. I am just wondering why some folks who have had AU like me for years react so well to the medication and others have very little regrowth. If time is indeed a factor, I am thinking that after 5 months (plus even more if you count when I started in August) I should have at least some regrowth on my head. I also think the dosage might be a factor, but I am not sure because I had done 15mg/day for over 8 weeks and didn't have a radical change. 

Permalink Reply by lusha22 on June 18, 2015 at 4:40pm
I go back to the dr in August... He said his hope by then is to see growth everywhere.... That's my hope too, but not sure if that will happen:( financially I can't afford 15mg a day, heck I can't even afford the 10mg a day.. Haha! But committed to trying this for 6 month total and reevaluate at that point. Im going to stay as positive as I can... As much as I want my hair to grow back and no longer live with AU, I'm realistic that I may not have the same results as others:( . Fingers crossed for all of us that we are just slow on the re growth!! I will say the DR. Said it usually
Takes 3 months to see anything If you've had it longer than 10 yrs. (I'm on 14 yrs).so
There is still hope!!
Permalink Reply by lusha22 on June 18, 2015 at 4:41pm
Oh and I've been on regains in the past... No growth anyway but my face! Not eyebrows or eyelashes... Just my face... LOL
Permalink Reply by Starshine on June 18, 2015 at 4:46pm
Wow, that is really interesting. It does sound like it initially kicked in when you upped to three times a day. Why were you not able to continue at that dose? Cost? I, too would like to do 3 times a day, but cost is a factor. I can't figure out either why some of us are not resoonding as well. The amount of time one has had the disease cannot be it because you have had it a long time and I have not. I wish we knew the trial results. I might try to contact Dr. King and see if he has any advice. Thanks for sharing your story. Like you, I intend to continue taking it and maybe do injections. I am also taking Plaquenil twice a day. A short dose of Prednisone may also help jump start it.
Permalink Reply by Football fan on June 18, 2015 at 6:45pm
Hi everyone in the same boat here.Starting week 9 and not one new hair anywhere started with about 30 percent hair on my head now down to 20.I do have all my eyelashes and about 40 percent eyebrows all my nose hairs and about 20 percent scattered body hair when I started but no change anywhere! So having some hair hasn't helped me at all.So glad to hear about the coupons that will help tremendously when I have to start paying out of pocket next month.My insurance won't cover xeljanz period even for arthritis.Im going to give it to the end of the year.Alopecia destroyed my life took a long time to start growing his hair so there's hope.I do have a crazy strong immune system I never get sick could that be why?Good Luck to everyone
Permalink Reply by Starshine on June 18, 2015 at 7:38pm
Hi Football fan. Never thought about that, now that you mention it, I never get sick either. Maybe our immune systems are too strong even for Xeljanz. I do think a stronger dose would help, but affording it is the problem. ADML did take longer, but least he had some new vellus growth each month. I think his first terminal hair was at seven months, so yes, there is still hope. Thanks for sharing and sorry you are in this crappy boat with the rest of us.
Permalink Reply by Kasten on June 19, 2015 at 10:37am

Oh, and I am in the same boat as you all.  I rarely get sick, and when I do, I have a quick recovery.  Perhaps the strength of the immune system plays a factor in how well Xeljanz works?

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