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 DJ88 on June 18, 2015 at 8:19pm

Whats the dosage your using right now?

Permalink Reply by katiegirl on June 18, 2015 at 10:12pm
Starshine, how long have you been AU? I too do not believe it to be duration of the disease and my dermatologist believes so as well. I am only 3 weeks in so I do not expect anything yet haven't even had 1 hair begin to grow
Permalink Reply by Starshine on June 18, 2015 at 10:29pm
Hi Katiegirl. I have been AU for 8 months, was Diffuse AA for two years before that. Never even knew this disease existed before I started with AA in 2012. You are still very early in the game, so don't worry. I did not expect the amazing results that Kyle Rhodes had, but after four months, I was hoping for more than I have. How long have you been AU? Also, I think younger people seem to respond better or faster anyway, just an observation which may or may not be accurate.
Permalink Reply by katiegirl on June 18, 2015 at 10:50pm
I too never knew of the disease. I noticed my first quarter sized patch in february and was AT within one month. I am not AU yet but I am on my way there I guess? Within the past month the loss seems to have sped up.my eyebrows and lashes are almost all gone along with my other body hair. I think my body is still in a very active phase of the disease. Wore a wig to my engagement party but hoping to be wig free for my wedding in a year - fingers crossed for all of us. It gives me comfort being a part of this forum and talking to other people going through this.
Permalink Reply by Starshine on June 18, 2015 at 11:05pm
I truly hope it works for you especially with your wedding coming up. It is a comfort speaking to and getting support from others with this disease. I truly believe a real cure is not too far away.
Permalink Reply by Football fan on June 18, 2015 at 11:41pm
I was a hairdresser and never knew about AA.When My hair started falling out like crazy went to my dermatologist who told me don't worry he's never seen a bald women!My edocrinologist was the one that told me about AA.had a thyroid problem about two years prior.I think that's what triggered it.Ive been using latisse before AA maybe that's why my eyelashes never fell out use it everyday.
Permalink Reply by Kasten on June 19, 2015 at 10:36am

Yes, cost was the factor for me not being able to do 15mg/day again.  I would recommend sticking at your current dose for longer (up to 6 months) so that you can see if you body does react to it with long-term effects.  I feel like I am having lots of vellus growth on my eyebrows, face, and random areas on my body, so perhaps if I continue things will spread and become more terminal.  I just haven't had much luck on my head, though I am going to see my doctor next month to see if he has any advice.  If you do reach out to Dr. King, please let us know what he says! 

Permalink Reply by katiegirl on June 26, 2015 at 5:02pm
Starshine,

Just wanted to let you know. I spoke with my doc who works at Columbia along with the team doing the research there. She really thinks that if it isn't working you just need a higher dose. She just upped me to 15mg a few days ago and I swear I already have new hairs growing in and what i have left seems to have stopped falling out. I know cost is an issue but I am working as hard as I can doing overtime like crazy to afford this.
Permalink Reply by Starshine on June 26, 2015 at 5:34pm
Thanks so much Katiegirl. I already came to that same conclusion and my doctor has upped the dose to 15 also. So glad it is working for you, that gives me hope. Did your doctor say anything about how to keep it once it has come in. Are we supposed to stay on Xeljanz forever?
Permalink Reply by katiegirl on June 26, 2015 at 5:37pm
She is saying the same as everyone else - this is not a cure but a treatment. She did say though that the trials right now they are using pulse doses or maintenance doses and so far that is working for many people. Any one who totally discontinues they believe will eventually see hair loss again. Hope the 15mg works for you as well praying for all of us.
Permalink Reply by Bumblebeee on June 19, 2015 at 1:43am
Hi, I've been on Xeljanz for about 5 weeks and so far I've been pretty disappointed. I've had AA off and on since my early 20s but ever since I turned AU in 2013, I've gotten constant prickling sensations everywhere I have hair and then it would fall out in a matter of seconds to days.

I was pretty excited to start the Xeljanz as I thought at the very least, it would get rid of the prickling sensations but of course as luck would have it, I was wrong. I have not grown any new vellus or terminal hairs. It did however, in my personal opinion, help with my eczema which was spreading all over my hands and arms. I do have about 15% of my hair remaining and it's still growing but I'm not sure if that's from the Xeljanz or because the alopecia hasn't hit that area yet. I guess only time will tell.

If this ever gets approved, I hope to God that insurance will cover various dosages because obviously different people need different amounts. Unfortunately it's not a one size fits all and I know I will need a higher dosage to hopefully see any results.
Permalink Reply by Starshine on June 19, 2015 at 10:17am

Hi Bumblebee:  I think you are correct in that not everyone will respond well at the normal recommended dose.  It appears that some may need a higher dose at least to start.  I, too, hope that insurance coverage becomes more accessible so that everyone has a better chance of success with Xeljanz.  You are still very early, so don't give up hope.    

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