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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 zarrin on
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The physician thinks my immune system is weak because of Xeljanz and my body not able to fights with fungal infection and also there is a chance for invasive fungal infection that will be fatal .most oral antifungal antibiotics cause liver toxicity and he is reluctant to prescribe for me.
Realy I don’t know what should I do. I have my hair after 23 years and I don’t like to lose them.this is the first time after 23 years I am feeling better and happy even with thiny and short hair.
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Try the bleach water a few times a day. Try an once per gallon and soak for maybe 10 minute's. Just an idea, but I bet it helps. If you find a nagative reaction. ..stop.
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I had a bad infection in two toes after a manicure (was not on xeljanz at the time)couldn’t even touch them tried peroxide ,benedine etc.Did not have time to go to the doctors because I was leaving on vacation.First day on vacation walked in the ocean by that night the infection was cleared up.Something with the salt water.My advice stop xeljanz and take the antibiotics you can always restart xeljanz.
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Hi Zarin, you do have some time with the meds. Recently I came off the Tofacitinib for a surgery - I was off for a week, and so far (8 weeks out) I haven’t had a shed or adverse outcome from being off for that week. I think it can be difficult for those who are prone to fungal infections, though discussing a lower dose for a period of time may also be an option. The reason doctors are hesitant to give anti fungals with Tofacitinib is that they increase the effect of each other (they are inhibitors of the same metabolic enzyme. So it’s harder for your body to process, that said I have used topical anti fungals with no issues. Though I am by no means a medical expert I do think most doctors are extremely risk adverse when treating with immune suppressants - particularly new medications without a long history of use. I had terrible eye infections while suffering alopecia, which have never reoccurred since being on Tofacitinib and my incidence of illness is much much less on the meds than off - so I think it’s not necessary just weakening our immune system overall and some do better on the meds than off. I advise having a very serious chat with your doctor about why coming off the meds is so difficult - doctors need to be aware of the emotional and mental health aspects of this condition when advising of outcomes. It is part of the risk/ benefit ratio that gets left out. Otherwise I would follow the advice offered by others- salt water, bleach and have a google on borax, soaking your feet in it may work- borax is a very strong antinflammatory and anti fungals substance though ensure you store it away from pets and kids.
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try taking a good probiotic..it may help
there are many in amazon
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Permalink Reply by Rascalx2 on
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Sorry for your hiccup with xeljanz, i was told to take shingles vaccination but i would have to stop xeljanz, so i have not opted to take that step yet, it is so hard when faced w getting the suggestion of stopping xeljanz, i worry alot of liver damage from taking xeljanz, and if that happened would i curse at myself for deciding to take xeljanz for hair and willingly taking risk over health... i have got eczema which i have never had, i wonder if xeljanz is a culprit? Good luck w foot fungis, thise little things can become major problems, there is still so much unknown about biologic meds such as xeljanz, who knows what will happen over long period of time on it... i feel so vain at times when i think that i am taking xeljanz to have hair, i wish it didnt matter to me but it certainly does!!
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It is very hard to take decision for stoping xeljanz and lose ally hair which was my wish for more than 23 years..I try to treat nail infection with remedy if not help I have no choice and will stop ( living in schaduw ):(
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I also had an early infection that I was taking xeljanz acnes and shingles that went missing in 2 weeks without any medicine. if the immune system is weakened with blood tests will be detected. even if you stop a certain that your infection disappears you restarted xeljanz as the said frida I do not think that in 1 month you will lose your hair. or tried to decrease the dose a while time. Do not be stressed for one has all had fungal infections that disappear. this is part of a side effect that I think is not fatal when stopping xeljanz unlike other effects that can be serious
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Thank you for advise, Firstly I will decrease the doseduring one week and stop for one month to see improvmet of fungal infection as I cannot stop immeditely.Six months ago when I stoped Xeljanz (because of bronchitis) I had general itching (I experienced before losing all my hair years ago)and I realized my disease flared up ( alopecia due to allergy?! ) .
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Question, I have been reduced to 5mg pills twice day. My doctor said this is the new FDA max for xeljanz. Someone with arthritis had complications so I got reduced.
I am going to see her this month, any prescription I may ask for to help support growth. I know people on this forum are more informed than me on alopecia treatment.
Here is a picture of the most hair I have had in 40 something years. FYI I get facial injections every 4 weeks.1566397454534-2040041093.jpg
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Hi Frrankie,
doctors are getting a bit anxious because of the recent studies on RA patients. While the concern is merited I do think they are not really looking at the studies in light of the population studied, but unfortunately it’s hard to convince a doctor who is risk adverse to view you as a seperate set of circumstances given they are rightly concerned about your health and their professional ethics. If your doctor is deadset on reducing your dose I would ask them to do it slowly - to give your body time to adjust to the lower dose, so a very slow reduction from your current dose to a lower one. You could also ask about taking oral minoxidil to give you a fighting chance to keep your hair growth happening. I think it helps to really explain to doctors of the emotional implications of this condition. I think mental health is a huge risk in alopecians - and that is a medical issues as much as blood pressure, diabetes, heart problems. More and more the implication of systemic damage done by long standing anxiety and depression is coming to the forefront and it is a very important area for doctors who are treating alopecians to be aware of.
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