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

 

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Permalink Reply by alopeciaguy1990 on June 27, 2021 at 6:23pm

Hey guys! Ive been following this thread for a couple years no. I have alopecia on my face and body so I started Xeljanz in September of 2019 and had all my hair back within 7 months (Normal Density and Color)...which was awesome! I stopped in November 2020 just because I dont know how safe Tofacitinib is and wondered what would happen with my hair. Well it all fell back out. Ive got a pretty huge supply of Xeljanz and have been thinking about getting back on it. My question to you guys is what is you experience with it health wise. Has anybody had suspicious bloodwork or any severe side effects or outcome? I would appreciate any feedback. I just want to make sure im not putting myself at medical risk while taking Tofacitinib. Thanks everyone!! :)

Permalink Reply by Linda on September 2, 2021 at 2:27pm

Good for you had amazing results!  I have been on Xeljanz since May, no side effects no strange blood work. My hair although white is growing back also, I am on a low dose compared to some of the threads I am reading, 5mg twice daily.  I asked my doctor your same questions and I think they just don't know at this point.  They don't know if it is safe long term. 

It just seems pointless to go through all this just to stop taking it and have all your hair fall out and it seems that is what happens to just about everyone, you know? I will continue to have my bloodwork done every three months.  I think they are going to have to determine how low a dose would sustain hair growth, my doctor did say as long as my blood work is normal its ultimately my decision. 

I'm sorry not great answers, but your regrowth was so fast! do you mind me asking what dose were you on? If you read back a few pages some people said their second time going back on the drug did work but it was slower the second time.  

Permalink Reply by Daire on June 30, 2021 at 4:19am

Hi all, 

I've had AU for 3 years. I've now been on  prednisone and seen Vellus hair grow. I want to take my prednisone in combination with Tofacinix. I'm based in the UK and was wondering has anyone has any experience ordering from Beacon to the UK?  Additionally do I need a prescription to order from beacon.

Any help much appreciated and excited to get started.  

Permalink Reply by Newjack on July 13, 2021 at 8:37pm

Hey all, 

Long time no see! I have been doing well. No set backs for me other than other health issues of getting older.

I got scoped today and to my surprise (or not) I have Candida of the esophagus . I was on a low dose of minocycline for acne, which I think is the culprit. Last year same time I got scoped, which is prior to getting scoped, and I was all good.

Wondering if Xeljanz is prone to Candida?  (I also dont have any symptoms, at least I dont think)


Thanks!
Newjack

Permalink Reply by Linda on September 2, 2021 at 2:31pm

Newjack my doctor recommended shingles vaccines because Xeljanz can cause skin issues.  I had a Candida outbreak prior to taking this drug, autoimmune I am sure, put myself on a strict candida diet no alcohol etc and it eventually cleared up. 

Permalink Reply by SaugaD on July 14, 2021 at 1:00pm

Question regarding Tofacinix. I have been on it for 6 weeks 5mg morning and 5mg night. Upped the dosage to 15mg for the day and started getting stomach pains. Not serious pains more of a discomfort so I stopped taking the pills for about a week and the discomfort went away. Anyone else experience this? 

Permalink Reply by kevin on July 14, 2021 at 11:46pm

hello do not worry I had the same thing of big intestinal pain in the lower left and sometimes bloating and gas discomfort, me it goes in 1 to 2 weeks it's time for the body to get used to it,
At the beginning I had acne a herpes sore and all disappeared in 2 months see more those are the first side effects but they generally disappear when your body is used to the medicine.
just check your stool if there is no blood.
this never tofacinix does not work beacon sells baracitinib (baricitinix)
I had bad results on the hair level it's been 1 month since I take baracitinix 4mg in the morning and 4mg in the evening, for the moment nothing has reported it is too early in any case no loss.

the only inevitable side effects with jaks are increased cholesterol so be careful with your diet. I've been on tofacinix since March 2018 and June 14, 2021 on baracitinix.
I recommend a complete blood test twice a year.

I advise you to switch to baricitinix since you had no results with tofacinix and personally I feel in better shape except at the beginning I had like you intestinal pain and bloating, which went away in 1 week.

I'll let you know if it works better than tofacinix,
it takes about 6 months to see its effectiveness,
and I think I added a pulse cortisone for 3 months intravenously
because it prevents the liver from tired drugs and the side effects of high dose cortisone.

ps: I went up to 20mg of tofacinix and saw no difference except when I added 6mg of betametasone cortisone once a week for 3 months. but when I stopped taking cortisone I saw a certain drop.

Permalink Reply by macdev on July 15, 2021 at 4:05am

Bonjour

J 'ai renoncé à la greffe fécale car impossible à réaliser pour le moment ( en France).

j'ai contacté beacon ( Abdullah Al Mamun) pour obtenir du Tofacitinix, Mais il lui est impossible de me dire si les douanes françaises bloquent l'importation . Aussi je sollicite ton aide, kévin, pour m'aider dans cette démarche, car tu sembles ne pas avoir de problème pour te procurer le produit.

merci d'avance

Permalink Reply by kevin on July 16, 2021 at 3:21pm

Bonsoir marcdev je n'avais pas de problème jusqu'au fin 2020

Mes colis ont été saisis par la douane plusieurs fois c'est du au personnes non résidents en France italien anglais qui ce faisait livré en grande quantité depuis la Douane bloqué les colis je commandait en petite quantité pour ne pas que ça paraissait suspect 

Maintenant je me le fais livrer hors de l'Union européenne et je me le fais livrer par une connaissance , mais cela risque de pas duré ci la douane ouvre le colis. 

Baracitinib va être autoriser pour la pelade en 2022 normalement je te conseille d'attendre qu'il soit approuvé 

Permalink Reply by macdev on July 18, 2021 at 12:42pm

merci kevin

Permalink Reply by ariel015 on July 23, 2021 at 9:29am

Hi everyone. I'm posting as an update/asking if anyone else is experiencing something similar... In April (2021) my hair was the best it had been for over 3 years and it seemed like xeljanz (20mg/day) was really working for me. I had no active spots, just a couple still filling in. Then mid April my doc told me to decrease my xeljanz dose to 15mg one day and 20mg the next alternating. I also got my first covid vaccine and went off xeljanz and methotrexate for 7 days. A couple of weeks after that, I noticed a new active patch, and since then, my hair has been getting substantially worse.. I have 3+ large active spots all around my head and new ones keep coming. I went off the meds for 2 days when I got my second dose a couple of weeks ago just for reference.

I am wondering if anyone else on xeljanz or xeljanz and methotrexate has experienced flares from the vaccine/going off the meds for 8 days for the vaccine?? Or experiencing flares lasting now 3 months after the initial vaccine? 

Any thoughts would be appreciated. Thanks!

Permalink Reply by Nat on July 23, 2021 at 1:31pm

Hi, I think that your spots are from reducing Xeljanz and stopping it. 

I reduced the dose and got spots. You, probably, need to increase your dose back to 20mg.

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