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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 carol on
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Hi Katrina! It's good to hear that you got full regrowth and you've been taking it for 2.5 years.
How big is your hair? Were you AU? I know someone who took ir for 4 years and went off without shed. She is in remission.
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Hi Katrina I have been taking Xelanz for 1 year I asked my dermatologist he told me that we need to give him time for the body to get used to and the immune system that is more used to tackle to the hair, he told me that it must be treated for a long time he is confident about the safety of inhibitor jak because it blocks only part of the immune system, compared to methotrexate and immunosuppressant, I have a person on this site it seems to me that it is starshine who takes xeljanz for 5 years it was 20 mg and for a year to 5mg and it seems to me that it stop the xeljanz and he has not suffered a loss.
after each is different but those who stop over a period of 6 months to 1 year or 2 years is too much according to my dermatologist.
I had a question about being on xeljanz have you suffered eyebrow loss or falling hair? I am French I procured xeljanz in Turkey and for 2 months I am on xeljanz tofacitinix gene, I did tested in a laboratory it is identical except that it is less dosed it is 4.2 mg instead of 5 mg I compensate by taking half a tablet.
next week I will take 500mg by bolus infusion of cortisone for 3 consecutive days per month.
during 3 months.
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Permalink Reply by Rascalx2 on
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i would talk to MD and definately stop taking it if you are going to get pregnant, and be off it before attempting , you will probably lose your hair but the joy in your life that comes w a child does not compare, look at it as your giving up
your hair temporarily to have a baby, then you can go back to xeljanz
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I hope he will not fall for so much spent-money health efforts and thoughtful morale is trying to reduce the medication and see how it goes. I wish you all the best that it will be well
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Hi Katrina,
i was actually looking at this the other day for some reason - I think I stumbled on it through my various reading- studies on Tofacitinib during pregnancy have been conducted on users who accidentally fall pregnant while on treatment. The studies are actually reasonably encouraging - there seems to be little increased risk of pregnancy loss, birth defects etc however the studies only cover a few cases, and the subjects were on either 10 or 5 mgs. Given its lack of long term studies though doctors still discourage use during pregnancies. It’s a tough one, the idea of losing your hair must be scary, though I have heard of women who have severe Alopecia (AU and AT) and are not on meds going into remission during pregnancy due to the weaken immune system - so you may be able to go off the meds without too much hair loss and then restart after the birth (if you decide not to breast feed) Having had two babies I can tell you they are worth losing your hair for :), but I know it feels like a really tough mountain to climb.
Here is a a link to one of the studies:
https://academic.oup.com/ibdjournal/article/24/12/2494/5047917
I was wondering how you are going- hope your wedding was amazing and bet it felt wonderful having your hair back for it!
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Thank you all!
About me - with no personal/family history of alopecia I became 100% AU over a 3 month period in 2016 at the age of 25. Although the cause was unknown, we do believe it was triggered by a severe allergic reaction I had to a hazelnut 2.5 months prior. They also found I had low iron, and increased IgE, history with asthma, and family history of RA.
I saw a dermatologist who initially diagnosed me with ADTA (acute diffuse total alopecia)- a new subtype of rapid alopecia that affects mostly females in their 20s, but has a favorable prognosis even without treatment.
However, 6 months passed with no re-growth... I was engaged to be married and desperate for my hair so I went on Xeljanz. It has now been almost 3 years - mostly at 20mg/day - I saw results after 3 months on the drug and and I now have 100% full regrowth of all scalp/facial/body hair.
We are now married and considering starting a family. Although I don't know if I want to come completely off Xeljanz now (or ever), I have decided to attempt to slowly decrease my dose to 10mg/day by next year. Although this makes me nervous, I am trying to remember that my diagnosis had a favorable outcome even without treatment to begin with.
Frida- thank you for sharing this article!!! I had not seen this one yet. (note: it does say 5-10mg "BID", which in Latin means twice daily, so that would include the same 20mg/day dose that I am on).
My dermatologist had recently shared two other/similar studies with me - both of 40-60 women with RA exposed to Xeljanz while pregnant and the outcomes (miscarriages, birth defects, pre-term births/low birth weights, etc.) were no different (and in one study, better!) than those found in a normal population. Same as your article, Frida. The most common outcome in all 3 studies I have seen of women exposed to Xeljanz while pregnant is a "healthy baby". And it is arguable that women with RA and UC have more concerning health situations than people with Alopecia. Specifically, there is a known risk of low birth weights associated to UC.
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Great to see i remebr the feeling of hope and joy i had when there was some hair coming in ...when you have nothing being AU , you notice 1 hair. All the best . Another month it will be too much to count
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Katrina - I think this bodes really well for xeljanz not impacting a pregnancy. I personally had terrible complicated pregnancies that in hindsight I think were a result of an over active response to the fetus. So being on an immune suppressant may have helped me avoid these complications. With my daughter I had a condition called polyhydramise - too much amniotic fluid. I think my body was producing fluid to try and seperate itself from what it perceived as a foreign entity (a bit like swelling that occurs around a splinter). For my son I had issues right through, and when he was born the umbilical cord disintegrated and I was left with a retained placenta, massive blood loss and eclampsia needed ICU stay. When they pulled the placenta (manually ugh- that sounds as gross as it was) out they said that it was ragged- like it had been attacked.... by an immune system perhaps... it was unexplained at the time but I think knowing what I know now about my body I think it was an autoimmune issue.
I know that baricitinib has had some problematic studies in terms of fetus exposure in mice so I think that possibly isn’t as safe but studies to date on xeljanz are encouraging. The main issue I would foresee is doctors being wary about allowing it without knowing long term impacts ... but that is the case with all new meds so not really an indication of known negative outcomes.
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Hey all. Decided I'll start sharing progress photos since everyone else who posts these have given me hope and I would love to do that for others.
I have AU and have been on generic tofacitinib from Beacon for 1.5 months. I take one of their 11mg tablets in the morning and a 5mg tablet at night. So far I've only noticed significant growth on my facial hair. I shaved a few days ago, but from the pictures you can see the hairs coming in and with pigment too! Some white ones are mixed in there as well. Right side of the face is doing better than the left but I'm just glad to see progress. Will keep everyone updated on this journey.
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That's great news Ahmed! Looking forward to seeing your success with it!
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Ahmed, these are great results! If you are seeing this at 1 1/2 months then you are gonna respond great to this med! Many take up to 4/5 months to start seeing the beginning of progress, so having those dark hairs coming in is very encouraging. I think often facial hair - brows, lashes often respond quicker because the hair cycle for them is much shorter and thus the commencement of growth is visible earlier. The exception to this is of course is when someone’s alopecia is much stronger on lashes and brows. Great stuff- so happy to see this success!
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