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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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Replies to This Discussion
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Permalink Reply by mastros on
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Hi all,
TL;DR: Here is my latest update. I am almost 3 years now on Xeljanz. I am taking Xeljanz 20mg/day - twice per week 15mg/day - and Minoxidil 5mg/day. Doing good with small spots that come and go.
Last posted was in the beginning of August following the wisdom teeth extraction and stopping Xeljanz for 12 days in total.
I had a few larger spots that came up in end of September probably because I spent 3 weeks drinking almost every day.
Returned back to my normal routine and the hair recovered within 2 months. Got to say that it was the first time in a while I opened such large spots and felt confident that they will fill up. Being a good responder on Xeljanz for a while and working on feeling better with myself, has really improved my attitude towards new spots.
Spots are coming and going, some more persistent than others. Yet nothing worrisome.
I have been for the past 1,5 month taking 15 mg Xeljanz twice per week instead of the usual 20mg (Dr. King and I have been discussing about it for a while and now I thought was the right time to try it). Not sure if something changed. I am inconclusive now, so I m going to keep it for February as well and see how it goes.
I have another couple of wisdom teeth removals in early March so I will have to stop again, and I am much more chill with that than I was the first time :-)
I have the latest photos with the whole last 34 months road included in the attachment.
Side Note: Reading the thread to catch up on it, I got to give props btw to @Frida Rupert for being so active continuously.
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aw_feb_2020.pdf, 4.9 MB
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Permalink Reply by Maurice on
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Awesome. You nearly had full regrowth in about less than a year.
I was wondering whether you are experiencing any side effects at all.
Been planning for a long time to start on Xeljanz myself, but afraid to take the step. I'm 10 years AU now.. last couple of years I had some hairs regrow on my scalp during summer time here in the Netherlands. But nothing significant, maximum 2 centimer hairs, few and far between. You'd have to pay attention to notice, but it's more than I used to get. Also I would probably have to get Xeljanz illegally. I'm glad that you guys have the chance to xeljanz get it in the USA, and it's wonderful to see the regrowth. That being said, I am anxious of the long-term side effects.
I will probably schedule an appointment with a dermatologist in about a month or so when I have saved up enough money.
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Hello all,
it has been quite some time since I’ve been on here. I have been off xeljanz for a few years now but am having a recurrence now. When I was on it insurance never covered medication and I was paying out of pocket. Does insurance cover it for people now and if so what insurances do people have? I will be restarting 10mg/day which is the dose i took back than and worked.
thanks!
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Permalink Reply by Jcortez05 on
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Hey! When did you notice growth after being on it the 2nd time ? My hair fell out again after my 2nd kid , I just started xeljanz (dr gave me a sample )
also, apply for the financial assistance program through zelsource , I did it when I lost my hair the 1st time after the birth of my son (4 years ago ) and I didn’t have to pay anything
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The first time I was a great responder, I noticed regrowth within 2-3 weeks. I did do the assistance program than also but they only covered 3 months I believe does it cover more now? I am also not sure if I’d qualify for it. Was wondering if insurance covers it now
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hi i suggest you order xeljanz genierique tofacinix the price is 15 dollars a box if you want more information type tofacinix in the search bar
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Is this a legitimate form of the pill? What website do you order from?
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Hi Katiegirl, sorry to hear about the relapse. Yes generic tofa citinib is legit, been tested by a few and is only very slightly underdosed. I’ve been on it for two years plus and most of my regrowth was on it. Customs is the only issue but many seem to manage to get it fine. Many countries have import schemes for personal use so no issue but others are more strict, however enforcement is a bit up and down- most get through from what I can tell.
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yes i'm french i tested it in the laboratory and i'm not the only one i'm on tofacinix for more than 1 year send me a private message i will send you the whatsapp number of my supplier starts by creating a transferwise account for their make the transfer this is the best payment method I don't work for them you can follow my news son it's to help you because you are a sui z person always helped on those forum you and frida have always been good advice so nicole and I forget
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Thank you so much for the information that is very nice of you. I will definitely be in contact!
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