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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 Jckah on
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I have some before pics on my page. I was completely hairless for the past 17 years. My Dr. is Ted Daly in NY, but it's one of his assistance who has been seeing me
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Permalink Reply by Megn on
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Oh this makes me so happy! What a great amount. I am 17 weeks and while I have growth it is not as obvious. So excited for you!
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Thanks Megn! I was really slow at first but I saw a lot of growth at the 3 month mark then that hair got longer for a few weeks but the resistant spots didn't respond, and from 4.5 months to today I'm seeing another growth spurt and those resistant spots are filling in. I went gluten free a little over a month ago too, just in case
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Permalink Reply by dr. who on
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since one of the inactive ingredients of xeljanz is lactose monohydrate and im allergic to lactose, i was wondering is possible to get xeljanz lactose free? . anyone here taking it is also lactose intolerant ? why the hell did they have to put lactose in the pills...
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Delighted for you, my eyebrows and eyelashes have just gone more or less for the first time, now some weird thing happening to my skin and getting bumps all over my feet...struggling here. Hopefully one day I'll get a chance to try something like xeljanz.
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Permalink Reply by kimberj on
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Hello everyone! I haven't been on here for awhile, life has been SUPER busy. I have tried to catch up but realized I am almost 60 pages behind :(
I thought I would share my Xeljanz update with you all. I have been taking 2 -5mg tablets twice a day for 13 months now (along with Plaquenil) All has been going very well until about 2 weeks ago. I have had a few very resistant spots remain but now my hair is falling out again. I first noticed several hairs in the bottom of the shower and have kept a watchful eye each time I bathe. Each time the tub has several precious hairs laying in the bottom. My spots are now bigger and new ones are forming. It is so devastating to be so close but yet so far.
I don't know what caused this relapse so suddenly. I have been stressed quite a bit. (My son left for Marine corps boot camp, hubby changed jobs, looking for new house) My Dr reduced my Plaquenil to only 1 - 200 mg tablet each day but that was in March or April. I can't imagine that having a bearing on anything but who knows. I see my Dr on Friday, Im anxious to see what she thinks. I have noticed that I have had several head colds over the past 6 months but other than that, I've had no issues on Xeljanz.
Anyone else regressing?
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Hi Kimberj, good to hear from you. It is concerning that you are experiencing hairloss on Zeljanz. Let us know what your doctor says. It definitely could be due to the added stress. Did you ever try getting cortisone shots in the resistant areas?? Maybe you could up your dose to three pills a day just to stabilize the hairloss. Mine is looking a lot like yours did in the growing out phase. It is getting longerand fuller, but still mostly very white. How long did it take you to get color? I am at 9 months now.
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Hi Starshine just added the plaquenil twice a day today. Also taking the xeljanz 3 times a day hope this works at seven months now and no new growth have been on 3 pills a day for 2 months. I know you took awhile before it kicked in so still have some hope.going to see what happens in the next couple months. I wonder what part stress plays in all this in my 20's I had several very stressful situations and never lost my hair. Then out of nowhere I developed a thyroid condition and aouple years later the alopecia. This condition has a mind of its own. How many of you out there are not responding at all I feel like I'm one of the only one!
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Hi Football Fan. I know how frustrated you must be feeling. Have you had any growth at all? I know you still had a little hair that had not fallen out prior to starting zeljanz. You know a few others on here are also struggling so you are not alone. My growth has been slow compared to others and is mostly a shocking white, although I do finally have enough to cover my scalp. I had never even heard of this disease and developed it, out of nowhere, in my late 40s. I do believe stress is a trigger. I Hope the Plaquenil helps. Keep us updated and feel free to message me if you want to talk. Don't give up, there is definitely still hope.
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