Alopecia World
www.alopeciaworld.com
Xeljanz (Tofacitinib Citrate): My experience on the trial
I have received a lot of interest from others on here in my involvement with the Xeljanz trials at Yale.
I thought it would be nice for everyone if I documented my progress on here.
Xeljanz is a Jak3 inhibitor and is believed to work with alopecia by turning off the distress signal relayed by the hair follicle to the attacking immune system which is the cause of the hairs falling out. Xeljanz comes in a strength of 5mg per pill and a full box contains 60 tablets. The recommended dosage for arthritis is 1 tablet in the morning and another in the evening each day.
The trial is set in a series of stages and there are requirements before participating. These include monthly visits and blood tests every 2 weeks. Dr Brett King is absolutely fantastic and is an inspiration to me. His positivity and enthusiasm gives me the much needed hope I have craved for over a decade. I have been put on a low dose to start with which is 1 tablet every other day. My dosage has now been increased to 1 tablet every day and next month it could be increased to 2 tablets per day depending on the results.
I have completed my first month and have already noticed my alopecia has stabilised . I have not lost any existing hairs. In addition to this I have seen little hairs growing in my chest area as well as eyebrows. Fingers crossed! To date, I have experienced no side effects.
-----------------------------
AW: Other discussions on Xeljanz / Tofacitinib
https://alopeciaworld.com/main/search/search?q=Tofacitinib
Replies to This Discussion
-
Permalink Reply by Football fan on
-
I had about 35 percent of my hair when I started xeljanz and now I'm down to about 20 percent.i think the past week it stopped falling out but there's not much left too fall out. I'm on week 16 and haven't seen any growth anywhere very discouraging!Not ready to give up yet.I wish we had some news about how the trials are going.It has been over a year now don't they understand we are all waiting to hear something it's almost cruel.At least we will know if you stay on xeljanz long enough you will grow hair or maybe a percent of people just don't respond at all. I hate to keep throwing away $2,100.00 a month if this is not going to work!
-
-
Serinaadele-- I'll be there next Friday too!! What time is your appt?!?
-
Permalink Reply by sadele on
-
Hi!
My appt is at 11:00 on August 21st, (next Friday). Are you there as well?
-
-
Hi Kasten. I have also been on Xeljanz since March with not great results. I added Plaquenil about a month and a half ago and just got a lot of cortisone injections. Hoping it will help. It's too soon to really tell yet. I do think it has increased the vellus, but like you, I still look bald from a distance. I was wondering about Jakafi too. I know it costs a lot more than Xeljanz.
-
Permalink Reply by kimberj on
-
Hi Starshine. Don't give up. I had thin vellus hair growth for a year from taking Plaquenil. It wasn't until I started the Xeljanz that it turned into thick terminal hair. I still have a few resistant spots but it is almost there. I have contemplated getting cortisone shots on those areas but I am afraid it will set off a chain reaction. I had monthly cortisone shots for two years and the hair beside the injection site would soon fall out, forming a new bald spot. I'm sure it was because I was in the shed cycle. Please let me know how it goes for you.
-
-
Serina, are you also using minoxidil 5% and taking biotin? I use both I take a daily 10000mcq of biotin that I got in CVS. I wish I had an answer about the hardship card. Im a nurse and it honestly disgusts me what people with no insurance and illegal immigrants get for free where we cannot even get the meds we need. Someone on here did say that you could write an appeal to xelsource. I would try explaining your total income and monthly bills and if you have children also include any additional costs you may have.
-
-
I've been taking Biotin and increased my vitamin D. I'm on 10mg of Xeljanz and have used minoxidil off and on. I can't agree with you enough about the frustration I've had with using the hardship card. Either I have to be unemployed, (and I'm not judging anyone), OR I have to lie in order to get any help. The fact that I have a job, family and make decent money I am told no for assistance. All though there are obstacles, I refuse to give up.
Out of difficulties grow miracles.
Something has to give.
-
-
I couldn't agree with you more. Keep pushing and don't give up. I would use the minoxidil every day though consistently. I put it on every morning with my wig like clock work. Another thing .. I haven't been approved for hardship either waiting to hear back. I went rheumatologist shopping where I live since they prescribe xeljanz all the time. This doctor gave me two months free samples. She had a whole box just in her office. I am seeing her again next week who knows maybe she will give me another. Phizer is the one who actually recommended I get samples from a doctor.
-
-
I'm doing the same as you. I have been on 10mg a day for the last month and I started 5mg for the first three weeks. Please keep me posted on what Dr. King says. I dont want to get discouraged but I have lost the hair I had from injections also. I'm trying to stay positive but it is hard at times.
© 2024 Created by Alopecia World.
Powered by
