Hi Everyone -
Just want to make sure you're all aware that there is a new study with the JAK-1 (Xeljanz) happening. They are testing it in topical form (yay!).
There was a trial site in my hood, so I went and talked to them. Unfortunately, I did not qualify for the study due to a history of cancer, but the dermatologist said people on the trial are "growing hair like crazy" from it! This is GREAT NEWS for us. In a couple years, I truly believe this product will go to market and we will essentially have somewhat of a cure.
Attaching some info I got from NAAF about it and here is the website:
Hi Erika Jane
On the Xeljanz forum of this website there have been a number of people who have had the drug compounded by pharmacy companies to topical form. There does not seem to be any actual firm results anywhere on success of the this topical version of the drug. This study is very interesting to me as I also have a history of cancer and would be very much unadvised to try the oral version of Xeljanz even though I am very tempted and am thankfully in a position to afford it. I really hope we get results on this study quickly.
I also have a history of cancer, so do not want to take Xeljanz orally. I'm hopeful for the topical version, but I know we are a ways out!!
I've been watching this one for a while, the current trial is scheduled to end in May 2018 (soon!)
I'm skeptical of a dermatologist already claiming people are "growing hair like crazy" since the trial is only a couple of months old but I'd love for it to be accurate! if it's effective hopefully a topical treatment will be faster to approval due to less systemic side effects. safer for pediatric use also.
There is also a parallel trial of ATI-50001 which is an oral version of the same, I believe.
would love to hear from anyone who is in the current trial
I was skeptical, too, but given the success the JAK1s are having, I am hopeful.
Yes, there is a parallel trial with orals, I believe. The reason I was so excited about the topical, though, is because I am afraid to take immunosupressents being a cancer survivor. While topicals still get into your bloodstream, it is not to the extent that an oral would.
Anyway, stay hopeful!
We are not on the trial but we are using topical xeljanz on my son and thank god we are seeing regrowth. this is interesting because this is a solution. I tried to get the solution for my son but the dr wouldnt prescribe it bc of his age (and the lack of research). I do hope and pray this line of treatment works, and insurance companies will realize that alopecia is a disease and should cover these meds
Do you mind if I ask how you are getting / administering topical xeljanz if you're not on the trial? I would love to do so myself!!
So glad you're seeing results!
the derm prescribed it for us. it is compounded at a pharmacy in philadelphia. we do have to check his blood every 6 weeks
Thank you :)
insurance wont pay for it. you have to pay out of pocket its about 300 for a small tub. Make sure to ask for the tub and not the lotion
Thanks that is super helpful!!
Hi! Hope4mySON, I am looking for hope for my son (and maybe for me too)...I have alopecia totalis (for 10 years) and now my son, age 8, seems to be losing hair. Can you tell me more about how topical Xeljanz is working for your son? How extensive was your son's hair loss? How much regrowth are you seeing? Any side effects so far? I sent you a friend request if you'd rather discuss by messaging. Thanks! Glad you are seeing some success with this treatment. I am gutted to think of my son now having to deal with alopecia but I guess there are quite a few treatments in the pipeline these days - quite a different situation than when I lost my hair years ago.
Hi he had lost 90 percent of his hair. I had read abt the dangers of constant steroid use and I read about the study of the topical w the mice so I immediately told the drs to prescribe it to him. I can say that the treatment does work but it has to be the cream in the tub or for some reason it loses its effectiveness