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 Merry on
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The only place I could find to add the invoice number was a section for a message to Beacon. It said it was for an email only. I don't know if it helped with my order or not. I have not received my order yet.
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Merry did you get your order? Just curious. I cant get them to respond and also, I get a pop up message on their web site that they are closed per the government.
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I’m not new to this site but I don’t post much. I have a question for everyone I’m currently on Zeljanz 10 mg once a day for about 2 months. I’m taking hair skin nail vitamins. I’ve done steroid shots since December. I keep losing waking up to more spots everyday. I’m at about 75percent loss of hair. I don’t know if it’s the stress of the Coronavirus or if the Zeljanz is not working. Any suggestions would be helpful on what to take or up my Zeljanz safely.
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Hi Lori - it can take up to and beyond 6 months for the JAKs to kick in for sure. I would absolutely stick with it, and if you can work with your doctor to increase the dose now would be a good time to do it. Do not despair - it can take many many months to work! I know it's tough when so many people seem to respond so quickly, but many of us had to wait much longer to see results.
Anna
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Hi Lori, I think patience is the hardest thing with this treatment - I needed 5 months, on 20 mg and a steriod pulse before it started happening for me. I now have full growth and have had full growth for almost 3 years. I always advise giving the treatment at least 6 months up to 12 months to start seeing a result. Hair growth is slow, and when your body is attacking follicles the attack needs to be well and truely shut down before hair can even begin to grow. Anna’s advise is spot on- I would ask about increasing dose- many need the higher dose, particularly at the start to get going and can very slowly and carefully wean down once growth is established. Also- for those who have ordered from Beacon - I got my package a week after they confirmed postage (it arrived yesterday) so they are still trying to get it to us quickly even in the current environment though being in Australia may be different to North America timeframes.
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Aa... Been talikg togacinix for a year 15 mgs a day been my lashes started to grow. suddenly about 10 daya ago it started rk fall down. And started taking 20 mgs in the last 2 days.
Any idea why it started falling and what can I do?
Ps I used a cream to start the initial growth but csnt use it anymore. Long hair
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Hi Sahel,
Have you seen any patches? There are people who do have relapses, most of these seem to pass with dose adjustment or just riding it out. I’ve had a few “sheds”, not noticeable to anyone but me, and I increased dose temporarily - though I think in the most part it would have recovered without the increase if I’d just held my nerve. See if the shed eases up with the higher dose and try not to stress (easier said then done). If you are not adverse to minoxidil it is very handy at thickening up growth, though you gotta be in it for the long haul.
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Hi everyone,
I haven't posted in a really long time. After years of being AT (fairly sudden onset in my mid-thirties), I started Xeljanz finally around winter 2018. I wanted to post my experience for those of you taking a long time for growth and to say thank you for all the information from this site.
My growth was slow to nonexistent at first for many months. My amazing Dr. kept offering to add steroids. I refused because of my previous steroid experiences. It took many months for growth to start (I want to say close to 6 at least) and almost 13 months to get full regrowth though it was very short and I didn't stop wearing a wig until over a year of being on Xeljanz for my own personal comfort level.
I appreciate the thorough replies Frida and others have posted about Covid-19.
My bloodwork has been great. I have actually been feeling so much better than I have in the past and haven't gotten sick hardly at all since being on Xeljanz. On other meds and in the past without meds I was getting sick a lot. I'm not sure if this is just a coincidence or if my immune system is calmed down and/or not being destroyed by other methods (steroids, other things i have tried). Other than weight gain, which is frankly normal for me anyway in the best of times, I see no side effects.
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I too, haven't posted for a while either but I do read the posts once in awhile. We're hearing quite a bit about some of the medications that treat autoimmune diseases that are possibly preventing the virus in those who take them, Lupus is the main one. Honestly I think that tofacitinib might be one too! I'm a Realtor and was around some clients that were really sick a few weeks ago, I was in their house doing open houses and showings plus helping with some staging. The symptoms were fever coughing, fatigue and the boyfriend caught it from her then she got sick again after he was better. They were not tested and didn't see a doctor but both were in bed for days. I thought I was getting it for a couple of days, I was fatigued but that might have been the stress of that transaction. Anyway, I wonder if the Lupus medication is a Jax inhibitor. Frida, what do you think? By the way, since I've been using the Rogaine 5%, going on about 3 months now, my hair is getting incredibly thicker! I could literally be a spokes person for the product. I'm still ordering my meds from India and taking 20 mg a day. Blood work is alright, white cell count was a little low but I think that's normal for taking this medication. I've attached some pictures. I was AU for 2 years before Xeljanz.
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Before Rogaine, taken Jan 26.jpg, 71 KB -
After, Pic take March 6.jpg, 98 KB
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thumbnail.jpg, 89 KB
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