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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how doea LDN help?

I have taken it for the last three days and gotta say I feel better. Might be placebo effect and my hair "seems" to be coming in faster. I'm almost 99% sure that's placebo talking BUT I was reading an article about LDN and some dude was really anti but it peaked my interest. The guy was going on about how it suppresses immune response but doesn't deal with the cause of the issue- so basically like xeljanz you gotta keep taking it for it to help.  The guy was basically saying it doesn't boost your immune system (yah for us with overactive immune systems) and the feel good feeling you get is from the body stopping the inflammatory "protective response ". Now this dude was a doctor but this was not an academic study by any means but it got me interested as I also have (hyper) hashimotos which LND seems to help(there has been some medical evidence to suggest this). And the halting of the response of inflammatory response seemed like a good thing even if it was a bandaid and not a solution. Personally I don't think LDN will grow any hair back but it might help a) keep hair a bit better and b) help if you have a secondary immune issue.  That said I stress this is conjecture and xeljanz, I think, is what is the key to hair regrowth but LDN has some interesting properties for those of us with wonky immune problems. Please don't take this as medical advice though and talk to your docs/do your own research before you consider it.....

do you need a prescription for LDN? thank you so much for details.

I bought mine online and it didn't need a script though that's in Australia and I'm not entirely sure about the legalities in other countries. I'm happy to pm your the site I get mine from but make sure you do a bit of a google firat to see if you think it's right for you. At first I was a bit leery as on some websites there was a indication it was an immune booster and our immune systems are already over active but after reading this dudes "negative" review on how it stops inflammation which is the bodies way of dealing with problems to protect itself (he was arguing that inflammation is helpful) I kind of though it actually might help. That said I would really check it out to see if it's something you wanna spend money and time on and it's no substitute for xeljanz imho. The main side effect seems to be nightmares but since I had all my hair fall out my worst nightmare has happened so can't imagine any nightmare scaring me much now LOL!

Please let us know how LDN goes. I do have Hashimoto too. I am trying to find a doctor to view thyroid issues more closely to the issue that my immune system attacks itself. Thing is that only the dermatologists agree and not the endocrinologists I have tried. 

Hi Mastros,

i think the LDN is helping. I'm a hyper hashimotos type (so far) and feel like it has calmed my system some what (and I've gone from being skinny to being no so skinny- kind of sucks but is maybe for the best). My combo of steroid pulsing, LDN and xeljanz seems to be bringing in the hair now. I think it got better when I added the LDN..... my bloods and thyroid checks have all been great so I am relieved about that. I think I've mentioned it before but I see an immunologist as I found the dermatologist and endo just didn't seem to be able to cross over enough. I'm not sure if that's an option for you but it was really great to be going to someone who kind of could understand the whole situation...

how long have you been hashis? I got diagnosed at the same time as my alopecia but my thyroid looks like cheese so they think I've had it awhile and just never knew.

interested to hear your story. Having a crazy immune system is no fun....

Here’s my monthly update: 

i am a 27 year old female, suddenly became AU 19 months ago.  Have been on Xeljanz for 16 months (started at 10mg/day and gradually went up to 20mg a day.  I’ve been at the 20mg/day level for about a year now).   My thinnest spots are really filling in.  I’d say scalp/brows/lashes/body are all around 95% regrowth (with the help of cortisone injections).  Blood work has been normal so far, and I’ve had only minimal side effects- such as weight gain and acne.  I had 3 serious colds when I started but haven’t been sick in about a year now.  Still wearing a wig because it looks like a mullet/The Beatles but I’m getting close to being comfortable with how it looks.... Recently my derm had me add 2 180mg Allegras (over the counter allergy medicine) a day due to a recent study that showed it helped made Xeljanz more effective.  I have nothing to report about that yet.   But after being engaged to my fiancé for over a year I am happy to say that I have  finally felt confident enough to set a wedding date, and I think I’ll be able to have my real hair for it!  Thank you, Xeljanz!!! I hope this message helps someone feel more brave <3

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Wow katrina!! So happy to read this. I am so happy for you and the pictures are beautiful! It’s really growing in so nice. That stubborn front has finally caught up! I was the exact same way. Glad to hear you will be setting a wedding date! 

Thank you!! Your posts helped me thru this nightmare so I hope mine are helping someone out there, too. 

great progress! Cortisone injections work for small spots after Xeljanz has starting doing its work.

any url to the research paper of Allegra?

Your hair hooks beautiful! How often are you doing the cortisone shots and do you do those in the scalp? Does your insurance pay for the xelijanz or do you have RA. Congratulations on your engagement.

I started doing cortisone injections last spring, and have gotten them done every 3

months since.  In my scalp and brows, though I stated to get dimples in my brows so I dropped to a lower dosage of cortisone.  I am on the hardship program for Xeljanz. I do not have RA.  Thank you! 

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