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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 katiegirl on
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Hi Jcortez,
my hair is doing good. I had restarted xeljanz in Early 2018 but stopped again when I got pregnant with my second child. I just had a baby June 7, no plan to restart xeljanz unless I start getting patches again which did happen after my first. Hoping for the best. How is everything with you?
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Hi everyone, I've been studying this thread (all 677 pages!) and I can't thank enough everyone who was shared their experience so far.
I'm looking to start taking Xeljanz and have just had a blood test before starting treatment, as is recommended. It turns out that I already have high cholesterol, which is a bit of a blow. I understand that a common side effect of Xeljanz is raised cholesterol, so I'm not really sure if it would be wise for me to start treatment. I'm thinking I might give it a go and if after the recommended 6 week blood test things are looking alarming I will have a decision to make. I doubt I will have a major medical event if I'm only on the drug for 6 weeks, right?Here are my figures for anyone who might be interested:
Total Cholesterol: 5.22 mmol/L (201.9 mg/dL)
LDL Cholesterol: 3.47 mmol/L (134.2 mg/dL)HDL Cholesterol: 1.24 mmol/L (48.0 mg/dL)
Total/HDL Ratio - 4.21
Does anyone have any thoughts on this? For what it's worth I exercise regularly and my diet is low in saturated fat - maybe I'm just unlucky! I will, however, take what steps I can to see if I can improve things.
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Permalink Reply by Jcortez05 on
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I also just had my 2nd - in February. I take xeljanz here and there used 1 month supply since April so I don’t take it very much at all .. so far I have my hair although I do have some patches but when I had my son in2015 I lost all of my hair (he was also born in feb and in July I was bald ) so I’m hoping it doesn’t happen
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Hi jcortez05,
I was curious if you ever took the medication daily? are you taking xeljanz infrequently just as a maintenance? Did you doctor recommend this or did you find this to work on your own? I’m fascinated about how unique all our experiences have been on the drug. I had AA and take 11mg daily. I have been taking medication for just over 3 months now. Would like to stop taking it as soon as possible.
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Permalink Reply by Mashloum on
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Hi everyone
Just to keep good news, my son after 17 months using one tablet Xeljanz, coverage is almost fully, but still certain patches in between as well eyelash and eyebrow
I am using hair regrow and Lumigan, but so far the response is limited
Lab test every three months are ok except LDL and HDL cholesterols as well vitamin D and ferritin
working on that and hopefully Allah will give us the blessing!
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Excellent news! Full regrowth must be so amazing for him. My ferritin levels were a bit low in my blood test as well- am taking iron supplements and recent tests indicate it’s going up to normal again now. I think autoimmune sufferers have a tendency towards low ferritin and issues with vitamin d. I take a high dose vitamin d as I quickly fall into deficiency if I don’t . So happy t hear this news of your boy!
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hi Kathy- I generally just use vitamins from piping rock or ones with decent reviews on iherb. The supplement industry is problematic and I feel like expensive brands are often no better than budget. Unless we test them ourselves (expensive and not practical) it’s hard to guarantee content, so online reviews and price is generally how I choose mine. I use iron only when bloods indicate deficiency but I take high strength vitamin d most days (10000 mg) as I tend to fall into vitamin d deficiency quickly (and I get lots of sun too...). Iron I take 102 mg of elemental once per day until I am in normal range on bloods and then drop it if bloods are good. Supplements, I find, are confusing- some have merit, and can have some benefit but on their own, I think they only help a small amount.
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May I ask what range you try to stay in? What seems normal for you? It’s such a big range for “normal”. I deduced that 80-90 is optimal for me. My dermatologist said most people dont react adversely to high ferritin, just low but I have issues on both ends of the spectrum plus she said it’s dangerous to be too high. Thoughts?
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Hi Frida,
what do you think about the generic Xeljanz from Beacon. Have you ever used it?
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