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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.
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AW: Other discussions on Xeljanz / Tofacitinib
https://alopeciaworld.com/main/search/search?q=Tofacitinib
Replies to This Discussion
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Permalink Reply by PJSuss on
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My son is back on 15mg per day (10 in the morning 5 at night). His hair looks great we are just seeing if going back to 15mg from 10mg helps fill in his eyebrows a bit more. We did blood work before this and all tests are normal. He will keep on 15mg for 6 weeks then we will consult with the Dr. I took before pictures with a ruler so it is easier to measure success which I would recommend to others.
Side update: my company switched to Cigna / Express Scripts this year so I have spent the past 4 months fighting for coverage. For the past year he was rejected by Aetna but given the meds for free from Pfizer / Xelsource.
Cigna also rejected him despite his good results. We appealed the decision and actually got it approved for coverage upon appeal!! I will see if I can find a CIGNA thread and add that note. The more examples of successful appeals the harder it will be for insurance to reject it.
Good luck to everyone..
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Thank you, but I would keep a back up source as they can cancel at any time.
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Is anyone here using the Pfizer Assistance Program?
I am using it currently, and have been for over a year, but I am worried what happens once my salary goes above their max income level for the program.
Has anyone been in this position before or knows what happens?
I can also call them, but I wanted to know before hand
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Hi everyone,
Quick update from me. I was diagnosed with AU 3 years ago. I tried Tofacitinib about 2 years ago. I was on 20mg for about 3-4 months and didn’t see any results. I ended up stopping treatment because I firmly believed that I was in the minority that didn’t respond to treatment. Fast forward to the beginning of this year, my new dermatologist recommended I start on the medication again saying that my initial treatment wasn’t long enough. This time around, I saw vellus hair growth within 2 months, terminal hair growth within 4 months and I now have 100% of my scalp hair back. My eyebrows are still very thin (probably only 20%), and the rest of my facial hair is patchy. This site is the only reason I discovered this medication so I appreciate everyone staying active and providing hope to all those going through this.
Also, if anyone in the NYC area has extra tofacitinib supply, I would gladly pay for a few weeks worth. I am running dangerously low on my existing stock, and with all of the delivery delays from Beacon I am not sure I will get my new order in time. Message me!
Hope everyone is staying safe and healthy.
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Hi NYGuy, thanks for posting - it's really encouraging to hear about your experience. Did you go back to 20mg on the second time around? And did you start on this dosage or work up to it? I've just started using Tofacitinib from Beacon (11mg XR in the morning, 5mg at night) so curious to hear how you came to your dosage.
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First time around I started at 10mg/day for about a month before bumping to 20mg for 3 months. Again, I didn’t see any results that time. Second time, I started on 10mg for about 2 weeks before jumping to 20mg. I have been on that dosage for 6 months now.
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that’s wonderful NYguy! I know I go on and on about the time thing but honestly it can take more than 8/9 months to respond in the beginning and it’s so hard not to give up, especially if you are stuck paying the insane price for the original. After being on a reasonably high dose (20 msg) I am now on 10 mgs (11 mgs but the generic so probably 10) most days, with every third day doing 20mgs. Have done this now for about 3 months with no repercussions, which surprised me - given the world situation is a bit stressful. I decided to try reducing so my stockpile would last longer, though I do feel supply will once again open up. I guess having been on the meds now for 3 years I am an old timer, and can say for the most part I have maintained better health on the meds than off.... So glad to hear of your success!
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Hi Frida , I have a question, I’m currently taking 20mg if Xeljanz with minoxidil for about a year and a half . I noticed yesterday that I’m developing a spot and it’s totally freaking me out !! I’m scared because I had an awful flair up while being on 15mg and when we raised the dose it calmed down but know I’m on the highest dose and I’m still having a flair up . Have you had any spots being on this dose ?
Maree
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Hi Maree,
I don’t think it’s uncommon to have a patch appear, unfortunately the only real way to counter this is to take strong steroids as a pulse therapy, though I think it’s important to give it time to see if the spot disappears on its own as steroids are pretty strong. In my own experience, and I hate that many of us on here have to kind of develop our own pseudo science, but Alopecia studies are clunky and restrictive so often we only find what works by putting the pieces together when self-treating, sheds and spots will come up, it is rare for it to progress to the extreme of AU/AT while on the meds. Treating prepubescent children is a bit more unpredictable but generally if you stay on 20mgs, consider temporary pulse treatment with dexamethasone and betamethasone if it escalates usually the loss settles in a few months and regrow progresses. Decreasing dose, I think, needs to be done very very gradually - like over months and months as opposed to weeks, as your body needs to stabilise in order to avoid flares. Unless bloods or serious health issues arise I wouldn’t even think about dose decreasing until a few years of stability. I had about two years of good growth before I attempted to decrease and that’s been over about 6 months of incremental decreases. I only did that because, with the global situation a bit dicey I wanted to ration my stock of meds. Incidentally, again, pseudo science here, but while being on Jak- inhibitors may make us more vulnerable to viruses - as in covid- it seems anything that reduces inflammation- is actually assisting in decreasing morbidity....I’ve noticed that over the three years I’ve used the meds my health has been much better and when I have become ill I seem to get less sick - maybe a side effect of reduced inflammatory damage.
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Hello NYGuy,I just received my notification from DHL express, with my tracking number and date of delivery to be July 1. My source, who is a little more expensive than Beacon but worth keeping because he always responds to my emails in the same day. He was able to send it yesterday 6/23. I live in California. Here's his information Ujwala <ujwalapharmaceutical81@gmail.com> I get the bottles of Tofacent.
My Dr. from UCSF is trying to get me meds from their discount pharmacy, $16 for a bottle of Xeljanz 5mg 60tabs. Not for me for a month as I take 120 tabs, but it's for sure enough to get me by, but it would still be great! You must be a UCSF patient. But I bet there are similar discount pharmacies out there at other hospitals that have the specialty programs.
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