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 kimberj on May 28, 2015 at 10:22pm

Month 7 on Xeljanz. No major issues or side effects. Still have some resistant spots.

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Permalink Reply by JHen on May 28, 2015 at 10:39pm
Amazing results. Have you had any side effects at all? Weight gain? Anything to note?
Permalink Reply by kimberj on May 31, 2015 at 11:54pm

I have experienced some weight gain and headaches but that is it so far.

Permalink Reply by Maree on May 29, 2015 at 2:00pm
Has anyone experienced tingling in hands and feet while taking xeljanx?
I'm also seeing Dr.King (who is amazing)
I was taking 10 mg to start and saw fine white hairs on scalp &a few brows and lashes within 3 weeks but because of the tingling he lowered me to 5mg and not seeing much now :(
Permalink Reply by Tamer on May 29, 2015 at 3:20pm
When I first started xeljanz it was winter, and my extremities were getting cold and numb very quick, with some tingling sensations. I would say these were symptoms of slight anemia. It went away after the first month. I would go back up to 10mg and ride it out, unless the sensations worsen.
Permalink Reply by Anisha on May 29, 2015 at 7:56pm

That happened to me with Cyclosporine.

Permalink Reply by Kat on May 31, 2015 at 11:59pm
I wish more people would be posting pictures of their hair growth progress! Honestly,so far i havent seen much to indicate that Xeljanz is any more effective than MSM has been for me, but I think some people were worse to start. I will say, it has given me baby fine eyebrow hair and a lot of my head hair is growing. BUT! It's still not good enough that i can go without wigs. And still dont have my top eyelashes back...
Permalink Reply by taraw on June 1, 2015 at 12:37am

I can get some pictures up - but I can tell you my experience.  I have had AU for 3.5 years.  NO HAIR ANYWHERE - no eyelashes, eyebrows, hair anywhere - nothing.  I tried oral steroids, squaric acid, gluten free, laser treatments, steroid injections.  The ONLY thing that grew hair was the steroid injections in the location of the shots, but then would fall out again exactly 2 months later.

I am in the trial at Stanford and began Xeljanz on February 23rd.  Within 3 weeks, I started seeing hair.  I stopped the Xeljanz last week as the trial is only for three months.  As of right now today, I have about 60% of my eyelashes, 35% of my eyebrows, and about 40% regrowth on my head - all thick black hairs.  I am not sure what will happen from here - but I can tell you what has happened to me so far.  I was on 5mg 2X a day.  Everyone is having a different reaction to the medication so I don't know.

This has been very emotional.  I cried the most when I saw eyelashes coming - tears of joy and amazement - but it may be short lived.  I am not sure what will happen from here - but I can keep you posted.  Feel free to email me if you would like.

Permalink Reply by cws on June 1, 2015 at 9:08am

I found a recent study result that is very interesting. It is a form of stem cell treatment that looks to have had very good results for alopecia. I don't know how realistic it is right now as an option, but it is great that they are doing studies of this gravity for the disease. Now that there is so much more understood about the disease, I am hoping things will start to rocket on the research front.

http://www.biomedcentral.com/1741-7015/13/87

Just as a side note: I am still on Xeljanz and things are still improving. Starting to get a little bit of growth on my legs now. I still have a couple resistant spots on my head but I feel like I am seeing some minor improvement there as well.

Best to all.

Permalink Reply by Hopeful on June 3, 2015 at 10:59pm
Thank you for posting the link, very interesting reading, let's hope this will be available soon as the results look very promising and there don't appear to be any side effects.
Permalink Reply by bauer on June 1, 2015 at 11:12am

Hi everyone!

Thought I'd check back in after a nice long week of vacation. I'm glad to say I can add my name to the list of postivie results! I have only been on Xeljanz for one month, but I currently have vellus hairs sprouting on my entire scalp, as well as my face. I have a couple of vellus eyelashes coming in as well, but the eyebrows seeem to be putting up the biggest fight. My face seems to have the most growth (and longest hairs), as it is actually noticeable from a coupe of feet away - kind of interesting as I never had any facial hair in high school before losing everything else. I was driving my car home yesterday and my friend from the back seat said he noticed some "peach fuzz" on my scalp from the back seat. It made me as happy as the entire week on the beach. I have been AU for 7+ years so I know that this is just a baby step in the process, but I truly believe all of the positivity and support from this site has helped mentally. I hope my news can help keep up spirits!

Permalink Reply by JHen on June 1, 2015 at 11:33am

Positive Results:

I have been on Xeljanz 10mg 2x daily since March 26th 2015. Since being on the drug, I have no side effects to report and only positive results. My diffuse/patchy alopecia has made a complete turn around. My hair on my scalp does not have any patches, and the diffuse areas are twice as thick. My Eyebrows and Eyelashes were the first things to begin growing back, and my facial hair has began to return. My body hair has been slowly appearing on random places. We all respond differently, and all of the positive results need to be brought into the spotlight.

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