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we have a few threads about oral Xeljanz treatment but nothing dedicated to information about the topical form. The cream seems like it would have less systemic side effects (more suitable for children?)
Are the people who have been using the cream getting it prescribed specifically as topical, or are you being prescribed it specifically or are you being prescribed oral and having it prepared as topical?
is there a separate trial being run for the topical version?
Does the topical treatment warrant a distinct information thread separate from the oral treatment?
My son is too young to participate in any trials, particularly of oral medication, but I'm curious what will be available to him in the future
thank you!
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I am interested in this too and I just posted a forum discussion with this link: https://vimeo.com/149187741
Dr. Christiano says in this audio interview that the topical formulation she made worked BETTER than the oral. She alludes that she has done what she can do on this and we now need a "pharma partner" to do a trial and bring this to market.
I worry this won't happen because the condition is "cosmetic" and the pharma types would expect it to be very hard to get insurance coverage (aka no profit motive). I hope that fear is misplaced.
She and the interviewer also briefly allude that any physician in the US can write a scrip to be made into a topical, and that this is happening, but they give no guidance on formulation or delivery method. Would love to hear from someone who is doing this whether it's remotely affordable. Intuitively I would think you'd need even more of the material to make a topical.
My thoughts are also that topical would use more material, but some of the other members are reporting paying $300 for a month's supply of cream, compared to $3000 for oral. But I haven't seen a lot of information about it yet (hence starting this thread)
I see that now. It seems from the threads I am looking at that $300 is actually for one week of the cream, which is still cheaper if it works. Clearly it would be helpful if someone using the cream with success could clarify. I was so interested in that interview I linked to, because it seems like there is an additional hair growth benefit to the JAK inhibitor, beyond disrupting the immune response, for turning hair growth on. Of course she is looking at mouse models, not people. I am also afraid this wonderful party is going to end for everyone if some of the folks self-treating with the systemic version bought in Turkey die from lung infections or worse.
Who is getting the cream for 300/week? :D I want to ask them questions.
user jags was the first person to mention it, you should be able to find her posts
Thanks for posting that video Jen.
I've read that there are two biotech companies that partnered on a JAK inhibitor solution for AA. Still in pre-clinical phase according to their websites (check out Rigel Pharmaceuticals and Alcaris Therapeutics) but good that it's getting some attention.
Link to press release a few months ago: http://www.prnewswire.com/news-releases/rigel-and-aclaris-therapeut...
There is already trials going on by Dr. Brett A. King at Yale along with other trials for rutiluxib (sp?) in multiple states :)
I've seen the trial documentation for topical ruxolitinib, but not the one for topical xeljanz. could you link to it?
Great idea having a thread dedicated to topical users of Xeljanz . This way everyone using the cream only can update on progress.
I have an appointment with my dermatologist in February and will try and get a prescription to order the cream and get started.
Mark
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