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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 Kate Jean on
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I don't understand all this, where should I look for treatment? It's been 12 years and I will do anything
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Permalink Reply by Tamer on
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Step 1: see a dermatologist/rheumatologist who will prescribe you xeljanz
Step 2: Find out if xeljanz is on your insurances covered medications list. If it isn't, then you must pay out of pocket, or apply for xeljanz copay care on their website and you will get 3 months for free.
I recommend you put the prescription through your specialty pharmacy, see if your insurance rejects it or not, then if they do, then just call up the pharmacy and tell them you would like to apply a copay card. In the meantime you have 3 free months while you work out your coverage situation with your insurance. If they cover xeljanz, then you can make an appeal, if not, then you won't have much luck.
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Just as a heads up , it is my understanding that the copay card is only for people over 18. My son who is 13 and we are appealing the insurance company would not be covered. Did I miss a Kyle Rhodes update?
Thank you
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Hi all,
I visited Dr. King yesterday for my first checkup since starting Xeljanz about 5 1/2 weeks ago, and he was ecstatic to see results. I have been completely 100% bald on my entire body for the last 7+ years, but after 3 weeks on the drug I began to see results. Currently my face, eyebrows, and eyelashes are totally covered in short blonde hairs, and about 85% of my scalp is covered in the blonde hairs. He predicted full regrowth since seeing such positive results so soon!
Since there were such positive results, he briefly explained the process of fighting the insurance company, which I thought I should pass on. I am currently paying for this medicine on the copay card. He told me of the next three steps he would take, in this order:
1. He would send out a letter with before and after pictures (by the end of this week) to the insurance company to show that the drug was working. If we are denied at this step, the next step is...
2. To request a review of my case from an unbiased third party with no relation to the insurance company. If the third party does not overturn the denial for coverage, the third step is to...
3. Fill out an application (with pictures and results included) directly with Pfizer for them to pay for the coverage.
Dr. King is taking care of each of these steps personally, and I will post again as soon as I hear from him on how step 1 went for us. He seemed very confident that one of these steps will be successful. If the insurance battle seems to take a long time, Dr. King said he may reduce my dosage from 2 pills to 1 pill a day to extend the copay card out as much as possible. Hope this info can be a little comforting!
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Hi Bauer -
I am in the study at Stanford and was on Xeljanz for 3 months - stopping it on May 23. In the 3 months, I have about 60% coverage on my head (full black hair), maybe 30% on my eyebrows and 75% of my eyelashes (after being AU for 4 years).
Has Dr. King mentioned what is happening to the people stopping the Xeljanz? I have not seen loss yet, but I have not seen new growth since stopping and debating going back on. My doctors at Stanford are preparing an appeal packet with photos for my insurance in case I want to go back on.
Just wondering if he has patients stopping and what is happening. Someone posted on here that Kyle Rhodes stopped and Dr. King said his hair fell out, but I am not sure if that is true or not. Keep my posted!
Thanks!
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Starting on my third month and no changes yet.did have all my eyelashes 40percent eye brows and hair was falling out rapidly now down to about 20 percent. Was definitely in a falling out stage. I want to give this drug at least 6 months has anyone found it cheaper than 2,800$.Im feeling kind of desperate.Has it ever not worked on anyone?
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Football fan, I am in my 15th week of xeljanz (10mg per day). I have had no results yet other than my nails seem stronger. I'm so disappointed, but my doctor still says it's too early to give up. I'm really hoping I get results soon. Good luck!
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Thank you very much for the information. We are meeting Dr. King shortly and I'll make sure to review the above steps. My daughter is under age 18 so I'm not sure how responsive the insurance companies will be for her...or I may have to wait until she turns 18 to obtain the co-pay card. I'm just wondering how long these trials will last before xeljanz is officially approved for treatment. Does anyone know the time line and when the results will be made public?
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We were told the Pfizer card is not valid for those under 18 :(
Hope you find out different.
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That is correct..but the way I'm looking at this is to try it for 3-6 months and see if it works. If it does..then we either have to continue to pay until she turns 18 or hope (fingers crossed) that the insurance company accepts it as a form of medication. Or...get to a point where she only needs one pill a day or every other day to spread out the dosage and save money. I know we are in good hands with Dr. King.
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I went to see Dr King on Tuesday. It was a four hour drive each way but Dr. King is very thorough and sympathetic. We talked about my history, alopecia overall and xeljanz. After my blood work results I will be using the co-pay card for 12 weeks. We went through his local pharmacy because they know the process and have the best price. After 12 weeks if there is success then we will lobby the insurance company for help in covering the medicine. Like Seahawks Dad I am hoping for some results in this 12 week period. He also has me on prednisone and prilosec. I will let you know
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