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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 macdev on
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hello
Diclofenac is not comparable with tofacitinib... they don't belong to the same drug family and I 'm suprised that diclofenac works..
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Permalink Reply by AlopeciaDestroyedMyLife on
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UPDATE 1: 2 pills a day at 1 week.
After 2 months on 1 pill every other day and 1 pill a day I am now on 2 tablets a day.
My mustache area has thick vellus white hair (one hair has turned black) .
Around 10 miniscule black hairs have appeared at the front top of my head .
My arms have a good amount of vellus hair everywhere .
My groin area has a bit of vellus hair and these are starting to turn black.
A few very small black hairs on my top eyelashes.
The only side effect i have experienced so far is an increased appetite.
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Permalink Reply by Starshine on
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Thanks ADML for the update. Do you have contact with other people on the trial to compare results? Unfortunately, I was too late to participate in the trial, but Dr. King said he will see me in February after the trials are completed. He sounds so nice and is very easy to talk to. Until the drug is approved for AA and insurance companies are willing to pay some of the cost, the cost is going to be prohibitive for the average person to take it. Please continue with the monthly updates, it gives all of us hope.
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Hi ADML...First off Alopecia has destroyed my life as well. I thank you for sharing your experience with all of us. Xelzanz and Jakifi (sp) have given us all hope. what a shame the drug companies have made it unattainable without insurance. People talk all the time about risk. Those that do, have no idea what it's like to live with AU. I feel like a freak every day of my life. I am so uncomfortable around people, I'm to the point that I try to avoid interacting with others all together (not possible, but I try) So do you think I am willing to take a small risk if I can maybe someday be able to feel human again. Hell yes!!!Thank you for the updates on your progress and I wish you wonderful results and the peace you (we) deserve.
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Permalink Reply by Apple on
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Absolutely! Alopecia took my happiness, my marriage, my life... but I got it back 2014 with xeljanz I can not go back. It really is a huge financial burden due to insurance companies not covering med. $6000.00 for one month for me for this new year.
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Permalink Reply by Dina on
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I am just wondering if the doctor had a conversation with you about perhaps the drug suppressing your immune system and the complications that could arise from that? I only ask because I couldn't wait to talk to my dr. about this after I saw the young male on Fox & Friends and his incredible story and full head of hair. My dr. immediately was very skeptical about me trying it and thought perhaps it could leave me open to infections etc.
I wish you nothing but the best, I hope you have amazing results with continued no side effects.
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This is really a two-fold answer. First of all does the medication suppress your immune system and leave you more open to infection? The answer is yes. But that is the same answer you would get for systemic steroids which are prescribed for this condition all the time. The real concern is long-term usage. This drug has its warnings centered around the understanding that you have rheumatoid arthritis and will be taking the drug at the recommended dosage for years to come. I do not believe that will be the case for alopecia. I think the approach for alopecia will be to stay on it until all hair grows back (approx 8 months is my guess) and then start to reduce dosage. We will have to wait for the results from the Yale study, but I think a 1/4 dosage or less would be the maintenance level required going forward. The reason you can approach this medication at such a low maintenance dosage is because it targets the specific mechanism of the disease. Systemic steroids not only carpet bomb your immune system but for various other reasons can't be taken long-term. This is all with the understanding that you don't have sensitive side effects with the medication (as with any medication). The Yale study is moving fast...it won't be long before we see what the results are.
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Yes I had the full talk on the possible risks . The risks are low but they are there .
There are a number of factors to consider:
1. Are you willing to take the risk?
2. Can you fund it ? (it's not cheap unfortunately)
3. Are you prepared to fulfill the requirements (blood tests , attending appointments consistently?
If the answers to any of these are no I would wait a while so we can have some solid evidence on risks/ effectiveness etc..
hope this helps
ADML
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ADML, Does Dr. King give you any feel on how their clinical trial is going? Also, what is best guesstimate when this drug may be available through insurance..1 year..3 years, 5 ???I have heard than Xeljanz will never be available for Alopecia because Pfizer does not have the patent for Alopecia application. Dr. Christiano owns the patent. has anybody read anything about that? Stay strong and thanks again for letting us all experience this with you.
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Hi Nick,
Its still early days some good results are expected in the next 2-3 months.
As for insurance it's very hard to say if Xeljanz would ever even be approved for alopecia. I have heard rumors about the development of a new drug based of what we have learned from the Jak inhibitors to treat alopecia exclusively which more than likely would be approved if the trials demonstrated it was safe and effective.This would be a few years at the earliest.
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1. Are you willing to take the risk....
This drug and study was discussed at a recent meeting in the UK by a prominent Dermatologist. ADML attended the meeting, he may not have been attended the talk by the derm, so I thought I would put his information here. . This particular drug has some serious side effects ...not the least of which is lymphoma (Cancer). I know that Owen (ADML) in particular is keen to go forward and fully takes on the risks around this.
2. Can you fund it...
At the same meeting costs were discussed for this drug treatment ...at this time to take this drug for 1 year it would cost approximately 40, 000 British Pounds which is about $65,000 US Dollars...so yes it is extremely expensive
3. Are you prepared to fulfill the requirements....
Time away from life, employment etc. may be prohibitive for most.
I realise we need people like Owen to forge ahead, but I also feel very concerned and would not put my daughter at such a risk for her hair....I understand that hair is very important but alopecia is not life threatening so therefore I would draw the line at taking a drug which could shorten her life in the hope that her hair would return.
While this is a real step in the right direction I feel concerned for Owen, but also support his want to do this.
Rosy
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Rosy. I understand your concerns but please do not put out information if you have not researched the facts. The US cost of Xeljanz at 10 mg per day is between $2100 - $2800 per month....at the high side yearly cost is $33,000. Please keep the posts real, the media already distorts this disease, we don't need to do the same. Thanks. P.S. Thank you ADML for responding to my earlier post.
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