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.
I totally agree. It is quite concerning given that we have an overactive immunesystem.
Hi all. Would you say we have a very strong immune system that should be calmed down or a very stupid immune system?
I think our body is smart. For e.g. if I was not started with AU, probably I would continue being a very stressed and anxious person. I was not in the right track (only working not enjoying the life, struggling with family, colleagues, angry, ...). My body told me that I was in the wrong track. There are people with cancer due to the stress... so I could feel even lucky being only hair.
I also think that probably we have other factor that we don't know and our immune system goes crazy. For example, I have a theory, I was detected with helicobacterpilory and cronic gastric, lactose intolerant, ... I think my inmune system was trying solutions and notice me that something was wrong.
The issue is that this doesnt seem temporal. I am sure that in 20 years it will be known the real root cause of this.
Hi Joserid, this really resonates with me. I had a very similar experience before I developed alopecia - very stressed, anxious, and life not on the right track. I knew something was wrong with my body, and like you was grateful that the result was alopecia and not something much worse. I think my body was reacting to my circumstances, and was crying out for relief. I do regret that I didn't make changes in my life that I knew were required! If I had, I think I might have avoided alopecia altogether. But now I'm aware of this, I won't let myself fall into those same circumstances again.
And how are you now sydap? Emotionally better?
Are you taking any treatment?
Hi Joserid, much better thank you. I'm on the Pfizer Ritlecitinib trial and pretty much at full re-growth. Hair still about 50/50 white/natural color and improving every day. How about you, how are you doing?
I am with AA from 2015 and AU from 2016.
I was not very motivated to take tofa. My dr in Spain, he has a great reputation, he told me that it was not secure.
Anyway, I met a friend whonrecommend to me this forum and I was thinking to start with tofa. Then, covid arrived and I did not make the decision because it is not clear to me if covid increase the risk of the severity.
So, my roadmap is to wait the covid vaccine (end 2021), start with tofa in 2022 and if we are lucky, swith to ritlecitinib in 2023!
Do you think is a good approach?
please, if you order TOFACINIX, you can tell me if you can get it to Spain, if customs make you trouble, Thanks
I am not still with tofacinix. I hope to start at the end of the year.
I don't know how to get it but here there are people that can help you. It seems that you can buy it in Beacon Pharma at Bangladesh: https://www.beaconpharma.com.bd/product/tofacinix-tofacitinib/
Is this useful?
Can people who have got the COVID vaccine remind me how they changed their xeljanz dosage? Im currently on 15 mg xeljanz one day then 20 mg the next day (alternating). I also take 15 mg methotrexate 1 day/week. My doc had said most ppl he knows stopped xeljanz and methotrexate for a week after the vaccine but that seems pretty long to be off xeljanz...
I got both doses and did not change the dosage.
im taking 20 mg a day. My doctor wanted me to stop for 1-2 days before the vaccine and then 1 week after the shot but that was just too long for me so I stopped 24 hours before and then restarted 5 days after the shot. I have only had my first shot for now but plan on doing the same thing with the 2nd one.