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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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AW: Other discussions on Xeljanz / Tofacitinib
https://alopeciaworld.com/main/search/search?q=Tofacitinib
Replies to This Discussion
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Permalink Reply by sasha1 on
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Exactly, it’s just all so unpredictable. I had an appointment with my dermatologist today as I wanted to speak with him about reducing the pred to 10mg from 15 because it started to give me a puffy face and that just makes me feel worse. I had all of my patches injected today also. Like I asked for, he’s put me down to 10mg of pred he’s also increased my dose of tofacitinib by 2mg I think, I was previously taking 12.5 a day. Just feeling slightly worried as something I’ve noticed is whenever I choose to have nights where I go out and drink more than 2 glasses of alcohol and smoke, the next day I wake Up with a huge amount of shedding, as though a patch is being created, which then slows when the patch appears? I wonder if there could be a link. And this worries me because next week I go Overseas to Europe for 6 weeks and I really can’t afford losing any more as I dont have a wig anymore and I dont want to have to wear one, also Im Lucky my current patches are not visible but if I lose Any more they might become visible whilst I’m away.
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Hi Sasha I have seen and been told that alcohol increases inflammation that is probably why
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Yeah it’s rough- I really hope everything goes well in Europe. If the shedding is slowing that’s an encouraging sign. Perhaps some time away will help relax and distract you. The booze stuff sucks too - gosh - we have to give up everything it seems- yummy food, booze, etc. I’ve never been a big drinker but for those who enjoy a drink - especially for the relaxation ( which we definitely need to do when we are stressed out about our hair) it’s tough. For me, as I’m chucking steriods(past but still...), xeljanz, minoxidil, LDN plus a bunch of supplements, and the occasional Valium at my liver and kidneys (plus my two coffees a day habit), I’m glad I’m not tempted to drink but it sucks that the one thing that might take the edge off for you seems to be a trigger.
I really do hope, time, and the experience of surviving this ( whether it’s a relapse or overcoming the anxiety of the condition) will make the journey easier eventually.
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I think that would make sense because also the other night when I drank alcohol, I woke Up the next morning with a completely puffy face from the steroids which previously was no where near as bad. Also I forgot to mention, my dermatologist also told me today that out of the 200 people on the medication at the clinic, only me and a few others have relapsed whilst being on the medication, but he told me that the Others only for a short burst had had hair loss and hardly any, whereas I’m yhe only one who has been having hair loss this excessively and for this long. Really disappointing thing to hear.
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Hi Sasha,
I know how hard it is to not have that glass of wine at the end of the day or when out with friends, I was a drinker, at least 1-2 glasses of wine a night and several drinks at parties and on vacation. I love it all but I quit cold turkey. It wasn't a bad thing as I must admit my drinking did get me into trouble, occasionally. I saw a nutritionist who told me to cut out all sugar of any kind including fruit, no coffee of alcohol and water, only, at room temperature. I did it for about a year, became borderline anorexic and sickly before I just said to hell with it. I didn't want to have to take xeljanz or use steroids and I believed the diet change would work but it didn't. I feel like I wasted a year but I had to try. I finally started xeljanz and I get steroid shots, one every 11 weeks. My eyelashes and eyebrows are coming in and I think I may be getting some terminal hairs. It's too soon for pictures, but I seem to be responding as I am into the Xeljanz about 10 weeks. I have stuck to the diet, only fruit sugars, Matcha Tea instead of coffee and no alcohol. I don't eat dairy or gluten either, except for an occasional egg. I just went to Mexico City for a 4 month supply as my insurance will not cover me. I heard that Vodka doesn't have any sugar so I broke down and had a couple of Bloody Marys. It gave me a little headache which tells me that my body doesn't like it so I will probably continue to not drink. Everyone had me freaked out about going to a Mexico for my meds but I will say it was fun, easy and not a single problem. San Pablo Pharmacy is one of the largest pharmacies in Mexico. I did not need a prescription and they were able to give me a 4 month supply but I had to wait a few hours for them to pick it from another store. I used a Visa for payment. Coming back into the US was just as easy, I claimed my purchase on the customs slip but I don't think they even looked at it. I thought that when I said I was only there for 4 days it would trigger more questions but it didn't. I am posting pictures of my purchase. What I find interesting is they only had 3 boxes of Xeljanz and a bottle like the one I get in the states. If I go again I will take the US container and ask for it. I paid 17909 pesos which equals 872 USD per month. Keep the faith, I believe there's a reason for everything and I also believe that our minds are powerful enough to heal our bodies but the help of a few medications to jump start the process, doesn't hurt. Hang in there and stay positive.
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Glad you managed it all and got back home safe and sound! The lengths we go to, but so happy it worked out and you are seeing some results. Also totally understand the diet thing - I was the same- tried so hard to do it “naturally” but alas all I did was lose weight and become ultra skinny...
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Thanks Frida! At least now I have enough to get me by while I explore other sources. I am thinking of increasing to 15mg. Would you suggest taking 5mg 3 times a day?
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If you think progress has slowed- or you could wait to see if it starts coming in at the dose your on. When I went up to 15 mg- I did 2 x in the morning and 1 x at night as I kept forgetting to take the lunch dose with me when i left the house and had read on this forum I think that the immune system is stronger in the am. It seemed to work well that way so I still dose 2 x a day just cause I know that way I will actually take the meds. So glad it worked out in Mexico!
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Carlie, i asked my Dr. he said 2 in the morning and 1 at night. So you can do this way!
Mexico expensive than Turkey, I’ll get mine 500 Canadian $ from there.
Good luck
shad
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Thanks Chad and Frida, I went to Mexico because it's closer for me and I feel safer and comfortable going there. The air fare was only 400 round trip, I think it was much more for Turkey.
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Chad, how much are you allowed to buy and bring back? Customs in San Jose was a breeze but I think they would be stricter in San Francisco. If I should decide to go to Turkey (I love to travel) I'll contact you for the name and address of the pharmacy in Turkey. I would want to buy 12 months worth at a time if I went that far away.
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