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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 Newjack on
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TC we're all feeling a bit low right now, but hang in there. Do you see any vellus hairs? You probably know this, but if your hair was already effected by alopecia and was tagged by the immune system it was going to fall out even with xeljanz in your system...
I have a few new spots my self, but they seem to have slowed down and they are starting to fill in. I just saw my doctor yesterday and she believes I also have TE along with my flare due to the infection I posted about earlier.
All we can do to help xeljanz operate better is help the body heal our immune system overall, which means backtrack and see what got us here in the first place and start from square one.
Wish nothing but the best, but I think what we need is time.. It was only a day ago I posted here myself and had a panic attack.. But we're all here for each other!
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Hey NewJack,
Thanks bud, really appreciate the support. So grateful for the wonderful people in this forum. I hope we can all celebrate together someday.
It's hard to tell if there's any new vellus hairs on my scalp because there were some already there all over. It's definitely thinned down to nothing. If I was 30 or 40% 3 months ago I'm now at 10% if that. I do notice some white vellus hairs on my knuckles and hands ( I know right? arrgggh).
I was also wondering if I have TE as well. It just happened over the period of a month. There were new spiky hairs and then a month later they were pretty much gone. My beard stubble seems to be growing a lot slower too. What used to be a days growth now takes 3-4 days. Really gets me down. I sure hope this turns around soon.
Do you take any med for your anxiety like a benzo?
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I used to take anxiety medication but I started smoking/vaping cannabis .Calms me down and it's natutna. Side effects eating good food .
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Ok, that's great. Do you find yourself looking for a White Castle at 2am? LOL
The reason I asked about the benzos is because my bio-chem friend was saying that almost 25% of patients that take benzos (Valium, Xanax, Klonopin, Ativan et al) & z-drugs (Zopiclone, Ambien, Lunesta) eventually suffer from TE shedding. Some as severe as 90% loss and that can effect the whole body.
There's two mechanisms, First one is interdose withdrawl. The benzos wreak havoc on the body's GABA receptors. The body tries to compensate and eventually builds a tolerance to the benzos. In between doses the body goes through withdrawl which causes severe stress resulting in TE among several other potential withdrawl symptoms.
Second one is an actual withdrawal from stopping the drug, even if it's a slow tapered withdrawl. TE can last up to a year until the body restabilizes itself. It doesn't happen to everyone, but in a much higher percentage than the medical community admits to. Apparently those of us that are genetically predisposed to issues with our hair are more susceptible.
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Permalink Reply by Lindzzej on
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Hey TC, what is TE? I’ve been wondering lately what if any effect benzos have on alopecia.
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Is that an interaction between the z drugs and Benzos or is it from both desperately. I occasionally take Valium on really stressful days, but during my AU totally bald phase I had to take them more as I found leaving the house anxiety inducing.... I actually don’t like the feeling on them but it was marginally better than the horrible feeling I had on very bad days during my year of recovery...
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It's either or. They don't have to be in combination. Both affect the GABA receptors similarly.
The reason he knows this is because during research they initially thought a drug was causing hair loss in patients, but it turned out that many of the patients had been prescribed benzos and sleep aids by their doctors to help deal with the anxiety and overall psychological stress of the illness. The research drug had nothing to do with the hair loss.
I totally feel and understand why you needed the Valium. This illness causes so much psychological pain and sadness.
The good news is that it's temporary and eventually grows back. All this to say if anyone is shedding and is or was taking benzos or z-drugs, it just may be TE and not a progressing AA/AU.
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Hi TC, I genuinely feel that the benzos didn’t cause any of my hair loss- as I took them after hair was gone, and in response to sheds not before them. That said I will stay well clear now. I was mainly prescribed them as I’d have horrendous nightmares during the alopecia about... well the alopecia etc, also sometimes it was necessary when I had to get my s**t togeather and do things for the fam etc. so many common drugs do have reported side effects of hairloss, though usually the % is quite low. Don’t wanna be risking it after all the trauma of the AU experience though!
i know it’s really hard for the new members who have started xeljanz only recently and are so nervous about outcomes etc, I think you,TC, said it well when you talked about immune tagging. By the time some of us realise we have alopecia the hair is already gone, it’s just basically sitting in the follicle waiting to fall... So if steriods/treatment commences after tagging it won’t save hair but it will regrow. It took me 4/5 months from starting xeljanz to get growth, and I was AU when I commenced - so unfortunately the hair growth can take ages to kick in. Please stay with it though. So many times in those months I thought - well it’s not gonna work out. But I got a really good outcome. My shed now is so minor that I wonder if it is a shed or just a cycling abnormality due to being AU, my hair has no patches and I am talking maybe 30 hairs a day that I see. I see a new thick shelf of growth underneath already growing in.
I do think that you NewJack are experiencing TE. My body gets triggered by infections in the head area- so one can feed the other but I think you probably protected most of your hair by being on a dose of the xeljanz at the time of surgery and the TE won’t go too far.
i also wanted to say that often the hair coming out is in response to treatment as a new healthy hair has pushed the old dead hair out. TE is common up to 3 months after commencing minoxidil as the old hair falls out and new hair comes in. It is also listed as a potential side effect of redlight therapy for the same reason. So, sometimes hair that is falling out is not a bad thing, but a response to your body actually working with the meds.
Honestly this alopecia stuff is very emotionally hard. I’m really glad I have this forum, as it shows how we can share information to help us recover. Without this site I would not have recovered, or stuck with my treatment. But I did because of the information that I got off this forum which allowed me to then go research independently, advise my specialist, set up my dose and co-treatment regime. Lots of love for all you guys currently in the early stages or the shed stage.
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Interesting!
All of the hair that is falling out I would say 95% are TE Hairs (they have bulbs, and look healthy) Which is the indicator that it has not been attacked by our immune system! If it is broken, no bulb and it does look unhealthy near the end it, our immune system was at play.
I had only been anxiety meds for maybe around the first 3 months of when I went AU last year.
I think the TE for myself is in relation to the minor surgery I had and the abcess I have been dealing with.
I have another surgery for it next week... Hopefully it takes care of everything!
Also, I am in the same boat as you (sorta) my AA spots have small spikey hair and velus hair they seem to have stunted its growth... I have a feeling that there is another factor at play with our bodies, for myself its the surgery/infection I am dealing with... Thats the obvious answer, maybe its something else for you? Or maybe just needs a little more time? OR maybe just need a relaxing vacation?
So many factors to consider, I say start with a vacation :)
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Permalink Reply by Sad_Rapunzel on
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Oh... This is what I was afraid of and this what my mother convinced me couldn't harm me
About two years ago One Doctor prescribed me mirtazapine + venlafaxine for my OAB. it did NOTHING for me, but I think my hair loss started progress around that time.
My mother told me I supposed to be at least one year on those medication to feel that side effects on my body, but do you think it could be related?...
TC, you are so knowledgeable, I cherish you, really.
Could you please give me one more tiny advice again? :(
What could I do and how could I make my follicles wider/thicker/bigger, if we will think of this loss/thinning as a TE from absence of menstrual cycles+weight loss+ AD side effects?
What could I do, what treatment is my best choice?
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Hi Rapunzel,
Mirtazapine (Remeron) can cause hair loss (TE) in some people both during and after treatment, but it's impossible for anyone to be sure that caused it for you. Are you still on these meds or have you stopped? If stopped when? Did you taper off gradually or stop suddenly?
I know you feel that things didn't go well with Dr. Bordone, but in reality they did and she was right not to prescribe Xeljanz. You don't have Auto-Immune Alopecia and that's a great thing! I tried to tell you that when you first got here and posted pics.
Anything that causes severe stress to the body (and mind) can cause hair loss if the person is predisposed to it. Hair & skin are closely tied to the CNS (Central Nervous System). It's why we get more skin wrinkles and grey hair when we're stressed. So anything that causes stress, especially chronic, can affect your hair.
Last time I suggested you see an Internal Medicine Dr. at Columbia and have a complete blood test including thyroid, hormones, CBC, Ferritin & Iron, and anything else the Dr. feels concerned about.
You also mentioned something about taking hormones, but is anyone following your bloods on this? Hormone supplementation needs to be monitored closely. Antidepressants can affect thyroid function, and so can withdrawal from them meaning that you may need more, less or no hormones where you are now.
You need to get your health and mind right so you can start to heal. That means eating normally and healthy. The body doesn't consider hair essential, when you starve it, it shuts down hair to conserve energy for more vital functions. Don't eat like a bird or a mouse, you're a person. Would you rather be skinny with less hair, or a little more shapely with a full head of healthy hair? Your choice.
Your body needs lots of protein right now, so dairy, chicken, meat, fish.
Veggies, lots of fresh fruit. Take a good quality multivitamin and a biotin supplement 5000mcg daily, but check with your Dr first.
Lastly you need to get your mind in the right place and be a better friend to yourself. I know it's a really difficult thing to go through. Almost all of us have felt that pain, and some of us are still going through it. But you have to get control and not let it control you. Hair won't grow and you can't heal if your super stressed out all the time.
Find what soothes you. Walks, a new pet, exercise, music, reading, volunteering to help others...whatever makes you a better person.
Just remember, this is just a passing phase in your life. Your hair will grow back and soon as you let it. It may take 6 months to year from when you truly start, but only you can decided when and if that happens...
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