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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!
Replies to This Discussion
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Permalink Reply by Julie on
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Hey everyone.. I've been on xeljanz for 15 weeks and I've gotten a lot of vellus hair on my arms and legs and grew back my eyebrows. I've had a fair amount of vellus hair on my head for awhile (probably about 8 months or so) but it does seem to be getting thicker. Like starshine i recently added plaquenil.
Has anyone talked to their Dr. or thought about doing a high dose (3-4 pills a day) for a month or two just to try to stop the attack signal and then taper off from there? I know it's super expensive but if you did a high does for a short time frame I wonder if that would make sense? Almost like a pulse of a higher dose?
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Permalink Reply by AlopeciaDestroyedMyLife on
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You wont be able to force your hair to grow faster i'm afraid it just wont happen.
If it's going to take 2 years on Xeljanz to get all your hair back then that is the rate your hair will grow, increasing dosage will make no difference . For people on 5 - 15 weeks, give it a lot more time! I've been on Xeljanz for almost an entire year and I only started getting terminal hair in my 7th month.
Your body is relearning how to grow hair , don't lose hope and give it a lot more time . It will work eventually.
Hope this helps
ADML
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ADML, you have been an inspiration and given hope to all of us.
I totally understand what you are saying, but for those of us who have seen no growth or any sign of hair at all for a few months, don't you think increasing the dose might help? I know you can relate to the desperation we are all feeling. Since you are treating with Dr. King, do you know if he treats those who have not responded as well any differently?
The problem for a lot of us is that due to the cost, we may not be able to be on it for that long a time period, but I do agree that if you can wait it out, that is probably the better way to go. Thanks for your input. It is really important for everyone to remain hopeful
The fact that you did take a long time to get where you are today is what is what is keeping my hope alive and I am sure everyone else will agree.
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Hi Starshine :)
After a few months it's definitely worth a shot if the immune system is not suppressed enough. If you are seeing even minor hair growth it is a good indication the medication is doing it's job and an increase in dosage may not be needed.
I myself am on 3 pills a day . As long as the immune system is suppressed enough hair will grow just only at the rate your body chooses unfortunately.
I know someone who was taking 4 tablets a day after only a few months but i'm sure something will happen if only they stick with it.
I can completely understand the frustration along with cost it's a real killer and the total desperation you must feel to want your life back. I really hope it works much quicker for you than it's doing for me.
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Permalink Reply by macdev on
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good evening
in my opinion:
For those who have no regrowth with XEljanz if areata hard for too long, the hair follicles are raised very high in the dermis and disappeared ...
Xeljanz only unlock the hair stopped in their growth ... so you have remaining hair follicles to make it work.
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Hi I posted this on another site and got no responses so I'm trying here.Will be going in for my 3 month checkup soon(still no growth yet)and I am the first person my doctor prescribed xeljanz too.What blood tests did everyone get at 3 months?Also I take Prilosec and heard it was being prescribed with xeljanz do you take it at the same time or several hours apart anyone heard of this?Any response will be appreciated thanks.
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Hi football fan. You need to ask them to do a CBC to check your white blood cell counts. Also a liver profile including cholesterol level. I am sure your doc will just send u for a slew of tests. My doc recommends I get it done every 4 weeks. I don't take prilosec but I understand why there being prescribed together.
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HI guys!
I have been on 10 mg Xeljanz per day (5mg every morning and night) for just over 1.5 months now and I am still not seeing any results, in fact I am still getting new patches. For some background - I have had alopecia areata for 2.5 years now, and have lost 80% of my hair, with some regrowth. I originally was treated with corticosteriod injections, but first of all experienced a ton of weight gain despite eating healthily and exercising 5x per week (30 lbs in 2 years), and secondly was diagnosed with ankylosing spondylitis in November 2019 so I stopped the injections then. December 2019 I started taking xeljanz at 5mg/day for a month, and then as soon as I was told to up my dose to 10mg/day was hospitalized for a lung infection. I have restarted the xeljanz at 10mg/day April 5th 2020 as I have recovered from my lung issue, but am just wondering why I have not seen results yet. I know it has not been that long, but has anyone else had an experience like this that ended with a success story?
DISCLAIMER: I am super grateful I have access to xeljanz and am getting the opportunity to try it, so I will continue to be patient. I also realize that taking this drug can have serious implications later or side effects, so I am not looking for any opinions on continuing taking it or not. Thanks :)
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Ariel015- would love to hear how you have progressed since May. I started 5mg 2x per day on August 10th, 2020. I very recently have started to notice a few blonde hairs on the top of my head. I was in the Baricitinib trial and had no regrowth on my head for 76 weeks but had regrown about 40% body hair. It never fell out when I stopped the trial, oddly. Since starting Xeljanz, I have noticed that my body hair is growing in more and I would say I have 75% of it back. I’ve had no side effects on the Xeljanz so far.
I am 28 and have had AU for 2 years. I had AA for about two years before that. I was diagnosed with AA when I was about a year old and all of my hair fell out and grew back immediately. After that, I really had no issues until about 4 years ago.
I have a twin brother who does not have alopecia but does have ulcerative colitis which I find to be interesting.
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Hi!
Since I posted that update, I increased my dose to 20mg/day mid August 2020 and it seems to be working but it is a bit too soon to say as I said I have kinda always had regrowth so I am waiting to see if the new patches stop. As for body hair, I still have two patches on my arms (which were the only two I lost). Only side effect is elevated cholesterol and a lung infection so far, but I am also on methotrexate. I would say the higher dose of xeljanz seems to be doing a better job of stoping the AA compared to the lower dose. When I have more updates to share, I will.
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