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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 Seahawks Dad on
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Good Morning Everyone,
I wanted to update everyone on my daughter's progress. We met with Dr. King last week and he was beyond helpful and extremely generous with his time. It's always interesting to hear someone's perspective on alopecia and how xeljanz is truly impacting people's lives. He is starting her at 10 mg per day and we have a follow up in 8 weeks. (with a blood test at the 4 week interval). Good press and good media continues to come out daily on this medication...and hopefully the costs continues to decrease. I truly appreciate everyone's feedback. I will be taking pictures of her progress and sharing with everyone. He did say Xeljanz was a lot less expensive to purchase in other countries...Switzerland, Greece, Turkey,($700-$1500) etc. So maybe you take a vacation and save some money at the same time!
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Going in for my 3 month checkup.My doctor is new to this medication so can anyone tell me what blood tests are done at 3 months?Also taking Prilosec not sure when to take it with the xeljanz.Hope some of the coupons work will let everyone know.No new hair yet but going to stay positive!
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Permalink Reply by sadele on
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Hi!
Were you able to get your insurance to cover the Rx? I just got my first month through the co-pay card and I'm creating a packet to appeal my insurance company to cover the monthly cost. I'm so thrilled that you met with Dr. King, I meet with him in August so it will be wonderful to hear his perspective on this whole situation. It would be great to see the progress your daughter will be experiencing!
Best to you both!
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I don't understand why dermatologists are prescribing Xeljanz knowing that hair is very likely to shed once the medication is discontinued. Nobody knows whether it will be effective at a lower maintenance dosage. Given possible side effects and high cost, I don't see how staying on this medication for lifetime is an option. I am sure Dr. King and others realize this, but they are still bullish about getting patients on-board. I don't mean to sound pessimistic, especially in light of people's amazing results, but I just don't see how this can be sustained long term. What do you guys think?
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I believe the hope is to go into some sort of remission. Or, perhaps, going on a maintenance dosage to continue hair growth.
Either way, it seems as if this drug is giving a lot of people hope and maybe this is just what we need.
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I don't think anybody's alopecia went into remission after going off this drug. People continue taking it at full dosage to keep their hair. Hope is great, but doctors have to be realistic.
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Permalink Reply by AlopeciaDestroyedMyLife on
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I can confirm just 1 pill every 2 days stopped my alopecia from spreading within a week.
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I understand your points .. But .. I also think very similar to those with RA who are taking this .. They will also have to continue it to find relief of their symptoms. I know taking this may be giving me false hope but just to have hair for even a year is better than nothing (at least that's how I feel). I hope by the time by hair is fully back or within a short time this med will become generic for alopecia patients.
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Well I will let you know what happens. I was on Xeljanz for three months, and stopped a month ago (part of stanford trial). So far, I am maintaining what I grew - but not growing much new hair. I think the point of the trials is to find out exactly what happens when people stop at different times. We shall see - I am not sure if I will go back on yet. I really do not want to take the xeljanz for more than 6 months. I regrew about 70% of my eyelashes, 40% of my eyebrows, 50% of the hair on my head after having AU for 4 years.
Good luck everyone!
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Thanks nickibee for responding! I'm so glad to hear that, and wish you the best of luck with your progress!!
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