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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 singh on
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Rach I don't think anyone who has started on xeljanz plans to stay on it forever.
Xeljanz targets Pacific pathways that cause t-cells to attack our hair follicles. As where other immunosuppressants Lower the entire immune system.
I am using this as a bridge and I hope there will be other safer treatments to surface soon such as the topical version of the jak inhabitors.
Am sure everyone has checked the side effects of xeljanz and am sure everyone has their own reasons to start xeljanz.
Or not start xeljanz.
It's a personal choice but I want to just say to negative people if you's are happy in your life with alopecia please don't judge others for starting.
Happy new hairy year guys.
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Permalink Reply by Rach1992 on
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It actually targets all of the t-cells in your body, not just the ones that attack the hair follicles. That's why it's so dangerous. It IS an immune suppressant, although slightly more "specific" than other ones- it still targets most of the immune system. I don't think a lot of people are aware of this- I think they assume it's more specific than it is. Just spreading honest awareness- not negativity.
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Not exactly sure what you mean by "targets most of the immune system" but if the implication is that it compromises most of your immune system then I think people would be reporting a lot more side effects (which we're not).
There are side effects with this drug. The FDA identified those side effects despite the potential for how bad they can be in some extremely rare cases. If you choose to not take it because potentially having your hair back isn't worth the extremely rare chance of those things happening, that's your personal choice. Sounds like everybody on here is well versed in the risks that they're paying a lot of money to take.
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I'm not implying that it compromises the immune system-I'm stating the fact that it does compromise it. It modifies the immune system by blocking the JAK enzyme from allowing transcription of DNA. The JAK-STAT pathway is important for sending signals involving bone marrow and immune system activation. The drug blocks the JAK enzyme throughout the entire body. It doesn't target the hair, which is why it works for Arthritis patients AS WELL as alopecia patients the same way. This means without the JAK enzyme, the immune system is suppressed.
Negative side effects aren't extremely rare, they're just uncommon. See for yourself.
http://www.rxlist.com/xeljanz-side-effects-drug-center.htm
"In the seven controlled trials, during the 0 to 12 months exposure, serious infections were reported in 34 patients (1 event per 37 patient-years) who received 5 mg twice daily of XELJANZ and 33 patients (1 event per 37 patient-years) who received 10 mg twice daily of XELJANZ.
The most common serious infections included pneumonia, cellulitis, herpes zoster, and urinary tract infection [see WARNINGS AND PRECAUTIONS]."
"In the seven controlled trials, during the 0 to 12 months exposure, tuberculosis was reported in 6 patients (0.5 events per 100 patient-years) who received 10 mg twice daily of XELJANZ.
Cases of disseminated tuberculosis were also reported. The median XELJANZ exposure prior to diagnosis of tuberculosis was 10 months (range from 152 to 960 days) [see WARNINGS AND PRECAUTIONS]."
Which means it's not that rare and they even reported cases of disseminated tuberculosis which means tuberculosis which has spread rapidly throughout the body and has effected nearly every organ. What is the likelihood of getting very long term/recurring alopecia areata again? Less than .5%? That still happened to us so I'm not throwing the dice about diseases I DO have some control over.
Also if someone just developed a very serious condition, I doubt posting to alopeciaworld would be their #1 priority.
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I think I am going to pass of xeljanz for the time being. And wait for the cream. I was planing on going to Turkey next week again to get more. Although I am having a couple of hairs that look terminal ( ive been taking it for 1 month and 3 days) . I already had 3 herpes zoster, two in the lips, that have kind of healed , and one in my neck, I am treating then with aciclovir. But it's evident my immune system is suppress, the healing rate is so slow
There are so many things I want to do in this life. I can live without hair, but no without the things I love to do.
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Again, I haven't once stated that the drug isn't an immune system suppressant. And again, with proper monitoring a lot of these risks can be mitigated.
You're probably right that most people would not be posting here about developing a very serious condition but I doubt the doctors who have been administering this drug to hundreds of people with AA would withhold that information from us.
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yes but almost all the trials ive heard of, have lasted max 3 months..
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ADML , Susan and others didn't see growth till later on. I think ADML said about the 7 month marker. And Susan said 3.5 market where she started seeing growth. Although there's was slow to start I think if it's a slow start it might be good long term as they have although over a year have 90% or more hair growth and touch wood are maintaining it. To see black terminal hairs I feel is a good Sign. However yes it can be good to see the people who have been on it longer to see if they can maintain it dr.who.
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I'm about to finish my third month. Been on 2 pills per day up until last week, bumped it to 3 per day. Substantial facial hair regrowth (which became noticeable in month 2). Some scalp regrowth but wouldn't call it substantial yet.
In terms of side effects, nothing out of the ordinary until this week. Had stomach flu which lasted about 1.5 days. Started feeling better yesterday. Don't know if its related to the medication or not (coincides with bumping dosage, but also had spent the prior week in Mexico, mom was dealing with same ailment, big change of weather in NYC).
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Permalink Reply by Xeljanzmiracle on
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Rach1992, thank you for your concerns for all of us. Perhaps you are not aware, but this a discussion started by a XELJANZ USER (ADML) who started taking it in the summer of 2014. You might want to go to the beginning of this discussion and read his background etc. I have personally read each and every reply on here since the beginning and this is why I can make this statement. "The MAJORITY of people on this site have had no negative side effects on Xeljanz." When I say the majority, I'm not talking about 51 percent. To be honest, a few have reported acne flare ups, but thats been about it. Since you have never ordered Xeljanz and received it, let me tell you that EVERY SINGLE BOTTLE comes with the side effects warning every month. When I first applied for it thru Pfizer's hardship program they sent me the side effects informatio in advance. Its also available on the internet. Those of us on Xeljanz ARE AWARE of the risks. The drug was already approved and used by millions for rheumatoid arthritis before Dr. King tried it on Kyle for his psorasis and AU. Its interesting to me that the ONLY persons on this forum against Xeljanz are people who haven't tried it at all and have absolutely no experience with it. As Singh pointed out, thousands will lose their lives all over the world TONIGHT because of an abuse of ALCOHOL from drunk drivers. Millions of people are ruining their health and damaging their lungs and BRAINS by smoking cigarettes, marijuana and cocaine (crack). We on Xeljanz however, choose to enjoy ourselves by looking in the mirror today and running our fingers thru our new hair. Hallelujah! And thank you ADML, our BRAVE XELJANZ WARRIOR for starting this blog of hope and encouragement for us. As he said last week, "Hairy New Year" Everyone!
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