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My experience with Ruxolitinib
I'm 39 and have had patches of AA since 12. I've been able to manage it pretty well with topical clobetasol throughout my life until recently 38 y/o I had a stressful event and it all fell out and first time experiencing AU. I began a trial with concert pharm last Jan 2019 taking the experimental deuteriated version of ruxolitinib at 12mg bid. I had rapid hair growth with first white vellus all over within the first month then 95% terminal hair growth by Aug.
I had a separate medical procedure in Oct that required me to be off of the ruxo. I immediately experienced full body inflammation. I had ezcema prior but never to this extreme and never on my face. My upper eyelids were red and under eyelids were dry and wrinkly and general splotchiness all over my face and extreme itchiness on my scalp and body. This medical procedure was quite taxing on my body which required freq blood draws and hormones and I figured it was the combination of withdrawing from ruxo and all these new things i was doing to my body. My hair maintained for the most part with some of the previous 5% non growth areas (mostly temples) falling out. But by Dec, I had some rapid hair loss about 50% gone. I returned to full dose of 12mg bid at this time, my skin cleared up within a few days. It took 4 months (April) for my hair to start to return and by Aug again, this time I had 100% of my hair.
Starting Jan 2020, I had a few extreme infections including a couple occasions of styes, herpes (I've previous had experiences with it but never this bad, it is a known side effect of being on this medication to be prone to more infections. I've also had more headaches than i've ever had since beginning this medications. The headaches were quite mild so not too bad just annoying. The infections were more concerning. Recently, I had another stye and extreme dehydration, I was really concerned so I interrupted the medication. Immediately again my whole body but mostly my face and scalp became inflammed. This time my entire face is red with swollen lymph node on one side. I consulted the Dr about this and he basically prescribed a topical and told me to get back onto the medication in order to reduce the inflammation.
I am quite discouraged by all of this. On the one hand, I have a full head of hair and very happy about that. But now my face is all red, dry and my head feels like its on fire. I was previously ashamed of being bald, but now i can't even show my face to the world with this full head of hair. I wish there was a solution to this. I'm wondering if anyone else has had this adverse withdrawal experience with a jak inhibitor? I'm not sure the trade off is worth it. What I'm understanding is that this drug will help your hair grow but then once you're on it, you're stuck forever (with the terrible side effects) or else your face will fall off and later your hair. I would love to hear a better experience if any of you care to share? Thanks for reading.
Replies to This Discussion
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Permalink Reply by NicoleT on
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well crap.
Sounds like we went thru this at right about the same age.
Mine was little patches starting in my 20s then full flown AU right about 40 triggerred by IVF
Ive never attempted to go off the tofacitanib because i knew all along from the research i did that to go off it means to lose all of your hair again.
so for me. im staying on, i guess forever. the only side effect i have had in the last few years on it is high cholesterol which is relatively easy to correct with proper diet.
You are at stamford? have you thought about switching to tofa?
I have had herpes (genital) since my 20s. I have no herpes issues on the tofa. an occasional outbreak if i dont take valtrex but no more intense than it ever was without the tofa.
keep me posted. sorry for the ezxema that really sucks.
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Permalink Reply by Jade on
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Hi Nicole, thanks for the response. Yes I'm at Stanford and yeah looks like our timeline is similar. I came off of it the first time was for egg retrieval which now in retrospect probably not the best idea for my body.
My cholesterol also became high, my lymphocytes was progressively getting lower (which probably accounted for the increased infections) and some weight gain, bruising in addition to the headaches. I'm likely going to stay off the drug and hope for the best. in my late 20s around 2008, I took prednisone for 1.5 months for when the AA got pretty bad like 40% gone or something and it all grew back and stayed up until my first experience of AU in 2018. So I'm hoping for a similar outcome of maintaining most/all growth even without the drug. But just gotta now deal with getting rid of all this ezcema...
It'll keep you posted.
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sorry to hear that. 12mg is the highest dosage in the trial, maybe too high for you.
Good luck
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Permalink Reply by Vanessa on
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Interesting! I was on Tofacitinib (Beacon) for a little over a year. I had AT when I started (had eyelashes and some other body hair, no eyebrows). I was able to grow eyebrows, better eyelashes, sparse hair on my head. Also gained 10 pounds. I decided it wasn’t worth it, and didn’t want to be on immune suppressant during pandemic, if it wasn’t giving me a full head of hair.
I reduced my dose around March and went off fully in July. Things have been ok until last month when I had eczema blew up around my ankle (haven’t had big problems with eczema before) and along with losing the hair I gained, I’m also now losing my eyelashes and body hair. My scalp is super itchy just in the last few days. My dry eye problem (came with alopecia) is worse. So yep, I seem to be having a (delayed) inflammatory response to going off the medication. It sucks!! I have been on an anti-inflammatory diet for almost two months (no grains, dairy, etc) and I did lose the weight I gained, but apparently it isn’t preventing rebound inflammation from going off the med? I don’t want to start taking it again because I don’t even have a reliable way to get it. Ugh. Hoping my body can normalize again.
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thanks for sharing your story Vanessa. i'm sorry to hear you're also experiencing rebound inflammation. I know how difficult it is, its been like over a month for me of increasingly worse eczema spreading everywhere. I'm currently seeking out light therapy and have always had an allergen free diet (no dairy, gluten, soy, eggs). i gained weight on the meds as well and have lost it since coming off of it, it was def med-related weight gain. Hope we both can normalize again and be free from suffering!! i also hope people know what they're getting into with Jak inhibitors and understand the risks because now i feel like i have two severe conditions instead of the one (AA, AU) i started off with before going on this medication.
Good luck and keep me posted.
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