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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 Sara on
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You believe that this new research will be made in vain and no drugs? After the University of Chicago and Columbia as they research on alopecia? After Alopecia never be healed?
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Permalink Reply by edie1122 on
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That's wonderful news! I'm hopeful that these types of drugs are the answer...as a woman with AU and 2 children with AA, I would love to know there are real treatments out there for them. Please keep us posted!;)
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Is anyone on the hardship program with xeljanz? I am taking the 11mg xr and have not had any results in 3 months which I understand is still early in the process. However my derm and myself both feel I should be on a higher dose since I have AU. Does anyone know the max dosage they will distribute on the hardship program? I am planning on calling them soon to see what they say but figured I would ask on here as well.
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Hi mike. Have you not had ANY results yet at all? Has your beard or eye brows or eye lashes not improved either ? Only asking as I'm starting xeljanz 11mg this month and also AU. Thanks in advance
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I CAN'T help Mike but maybe I can help you.i am 46 had au for 41 years. I have been on xaljanz for almost 3 months. I have additional growth on my face and head with xeljanz. I have also gained some eyebrow hair and eyelashes. The growth is mixed on my face between thick and thin hair shafts.Some have color and some are colorless. The growth on my head is think fine hairs.Some have thickened but most are not cosmetically ideal. My,fingernails have become stronger.
I don't know,what to expect but I have gotten results. I still have shedding but still have the most growth in years. I am on 2 pills a day and have by blood work done monthly. I hope in time to move to higher dosages. If I can get something after 41 years maybe you can too. Just try not to have expectations.
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That's great news Frankie! I am very happy for your response to the meds. Besides my fingernails becoming much stronger (which I'm extremely happy about), I unfortunately have not had any results with actual hair regrowth. I have been on 11mg for 11 weeks now. I know everyone responds differently and at different rates so I am not completely discouraged just yet. The one area where I have seen regrowth is a quarter sized test injection area on the back of my head which has grown in thick and dark about two months in. Since that area has and continues to grow, my derm started me on a month long round of prednisone (60-40-20-10mg) in the hopes that it may jumpstart regrowth. In theory it makes sense but we shall see if it actually does. All in all, I feel I will need to be on a higher dose of xeljanz (15-20mg) to see the results I desire. I am trying to figure out the best course of action to acquire it and may have to pay out of pocket for the remainder of the dosage if Pfizer will not up my prescription (most likely go to Mexico).
The key here is to have realistic expectations since we all respond differently. I think it's important to even think outside the box on combination meds to optimize the results. I have a great derm that is committed to try just about anything (within health/cost parameters of course) to give me the best opportunity for regrowth.
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Thanks for the response mike and frankie. I'm a strange case. Scalp 100% loss. I've still got full uneffected eyelashes and 40% eyebrows. 60% beard remaining. Strangely under arm and finger hair completely uneffected. Not holding my breath though and accepting that without treatment this will progress to 100% loss all over. I'm Irish mike so I'll have to fund this out of my pocket with zero assistanc leaving me with only the turkey route to acquire the drug at sensible prices. That's why I'm asking for your experience as I'm hoping to acquire 11mg XR version in turkey and can hopefully either sustain or maybe improve the present condition. Thanks again and good luck to you both with your progress.
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Hey Bibby, some hair is better than no hair at all! Unfortunately nobody knows the correct dose until you start taking it. This forum is a great resource and shows that there is really no standard strength that works for all (it seems the more severe alopecia correlates to a higher dose for most people). After almost three months of no regrowth, I come with the notion of go big or go home. It really comes down to finances and what your body can handle. I have had minimal adverse side effects so if I am financially able I am going to up the dose. On the other hand, you do not want to take more than is necessary and most dermatologists will start low (5, 10, or 11mg) and work your way up. Best of luck my friend!
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I have been thinking. If the dose is too low lower you BMI. Sound easy and logical. I have not achieved much in this idea. Felt like sharing something that might help. An endocrinologist told me to lose weight. I am 5,8 225. athletic but could lose 20 pounds if I got strict, The endo without seeing me said I was 32 or 34 % over my BMI. That is 75 pounds. I laughed. But my point is losing weight if you can might help.
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I don't think you can get more 11 MG dose from hardship program. My guess is people using higher dose are paying for it on their own.
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Permalink Reply by Rascalx2 on
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Mike, july will be a year on xeljanz. Was on 11 mgs for about 9 months with no results at all. Went up to 15 mgs ans started to have some activity, when I went up to 20 mgs a day I started to see some more. The only place I have grown anything is my beard, peach fuzz on scalp, peach fuzz eyebrows, peach fuzz eyelashes. I have been shaving my head because it looks ridiculous when it starts growing out.. it is so sparce. The hair - peach fuzz is all colorless white. Im going to keep going with xeljanz to give an honest try. Its only hope right now.gonna stick with it little longer to see what happens, I m starting to let go that I will have hair I used to have. All I reallu want is eyebrow and facial hair at this point. Good luck!
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