Alopecia World
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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 kevin on
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hi frida normally you will have anticoagulant injections if you stay lying or sitting for a while, it is true that with xeljanz in addition to 20mg it does not help the problem of clots in the blood, but it is infrequent I read that cetais 4 out of 250 people who have developed a thrombosis or embolism and it was people who are increased has developed this kind of problem be careful can be reduce the dose to 10 mg the time you you back. has the slightest problem makes you in the emergency the symptoms of venous thrombosis or pulmonary embolism are difficult to detected.
on the other hand I read some people who had a general anesthetic noticed a hair loss I do not know why.
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a blood clot formation is not an infection so do not worry about that
Venous thromboses appear because of an extended or sitting position for a long time.
and xeljanz from what I understand can thicken the blood hence the risk of thrombosis or pulmonary embolism but those are people predestined to have this on a dose of 20mg but it was on cases of person treated for plolyartritis and it was 4 out of 250 but you have to watch as even the few symptoms go to emergency or go see your doctor.
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Hi Frida,
You'll want to give your body the best chance to prevent any complications or issues. Consider pausing Tofacitinib 7 days before surgery. It's very important to also pause Resveratrol because of its blood thinning properties as well.
Ask your doctor for a PTT/INR (Prothrombin Time Test) a week before surgery, and then a day before. This will indicate whether your body's clotting ability is normal and safe for surgery or not. Results are usually same or next day. Hospitals can usually get the results within a few hours, especially before surgery. That takes the guesswork out of any unforeseen clotting or bleeding complications, and will put your mind at ease.
With that out way, that leaves post surgery wound healing and infection risk. You'll want your body's clotting ability to be normal, and immune system to be as strong as possible to produce collagen to heal the wound and deal with infection. You've got a superpower, use it! Since you'll most likely be on antibiotics post-surgery, you can't/shouldn't take Tofacitinib concurrently until at least 24hrs after the last antibiotic dose, usually 7-10 days post surgery.
Good on you for taking the time out to get this done and out of the way.
Everything will be fine :)
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Permalink Reply by Rascalx2 on
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When i go down to 15 mgs from 20 i get lots of spots, im male but i woulnt take it to get pregnent
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hi rascal how long have you been taking xeljanz?
if you are a man you can make children it's forbidden for women
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Been on it for 2 years, already have kids, had kids before hair loss, ive said this before on here , its still never has gotten thick as it used to be, can pretty much see scalp, spots in the back.. im just taking it to keep what i have and have brows, lashes and facial hair.. the top is what it is, most times i look at my head if hair and am grateful to have it as thin as it is because i had nothing at all 2 years ago. I sometimes want to go shorter or shave head but the spots are all over and show up more when its shorter.,, it kind of looks like a punk rock do, spots will be bald , then it grows in white, then falls out.. its a weird thing , i dont ever notice girls checking me out but i think its because im up at the age where i just dont matter anymore, im late 40’s, im married but its always nice to be acknowledged
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Hi Frida
I’ve been so impressed by your journey and the support and inspiration you have given to others on this site. The medics involved in your recent health concern should be able
to balance and assess the impact of xeljanz.
I look forward to hearing your posts about your ongoing recovery ! X
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Thanks magmck,
i have gotten a lot of support on this forum from people so I like to give some of the love back. Without this forum I wouldn’t have my hair back! I just hope that people can come on here and find a way to get back their hair. I will update everyone on this site through the process (still awhile off) and hopefully it all goes smoothly and it will help those who may have to have surgery figure out their way through it.
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Thanks guys! I’ll defintely keep everyone posted on how I go. Surgery isn’t until end of June and I’m weaning off most of my supplements except for vitamin d. I’m going to probably cut down my xeljanz to 10 mgs a couple weeks out and then off for 4-5 days prior. The doctor is prescribing some antibiotics that are not metabolised by the same enzymes as tofa so he says they can be taken togeather from a few days out.
Blood pressure will be monitored closely (mainly as I had eclampsia birthing my boy) and I will defintely ask about that anti-clotting test I can take prior. Hopefully the wound will be very small and so risk of infection is low. It’s one of those things- I could put it off but then eventually I need to have it done and I feel pretty healthy at the moment, so I feel it’s a good time as opposed to when my body isn’t as young and healthy.
i know that New Jack - you had a surgery that was rough - so fingers crossed. I’ve been less prone to things on this med so far and bloods are all good so hope the is a good sign.
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Looking for some advice- I have been on Xeljanz for over 2.5 years (mostly 20mg/day) and have full regrowth, and though I am tolerating it well, I am considering slowly weaning down or completely off to maybe become pregnant next year. I haven’t been on here in a while but I’m hoping to reach someone with experience weaning off the drug- what worked well or what didn’t? Or also, anyone’s opinion on if it’s safe being pregnant while on a low dose of Xeljanz?
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I think it explicitly says to completely stop taking the medication if you are pregnant. I would ween off it and not stop cold turkey... It would then be safe for you to go back on the med...
That is my understanding, I would consult with a doctor though.
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Permalink Reply by Sad_Rapunzel on
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such amazing words to say - "full regrowth"... you exist! girl who has full regrowth!
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