"Hello everyone,
Sorry for not replying, it turns out Pfizer added another year to my trial so I don't have to worry about getting meds yet! Very exciting. One question though, has anyone had surgery while on these kinds of meds? If so, did you…"
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Cassidymain
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- Westfield, IN
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PF 06651600 Trial
Started this discussion. Last reply by Mike R May 21, 2020. 13 Replies 0 Likes
I just wanted to create a post to document my experience on the PF 06651600 study. I’m not sure how good i’ll be about posting but i’ll make updates when anything happens. It’s a year long…Continue
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"That would be so helpful thank you! I’m in the pf-06651600 which inhibits jak3. "
"i’m in the pf-06651600 trial and i was AU! i’ve been on the trial for two and a half years now and was AU for three years before that but AA for two years before that, Now i’m on 50 mg of drug and i don’t know how that would…"
"Hello everyone!
I live in the USA and Ive been in an alopecia study for two and a half years but it’s coming to a close for me by the end of this year. I’ve gotten mostly full regrowth and i couldn’t be happier! They have…"
"Hi Cassidy,
I hope you’re well. I’m about to be screened for this particular clinical trial. I’m curious how things are going for you at this stage. Has the growth returned and stabilized?
best regards,
-Mike"
"Thank you! I’m just glad i can help :) "
"No problem! I was and am feeling a little discouraged but i’m so glad i can help people struggling to have hope, and be apart of this study so they can learn more and have a better treatment for all of us in the future. You should definitely…"
"That’s amazing! I’m so happy for you it’s incredible what these medications can do for us. I’m excited for things to get better and better for you!"
"Hey guys i know i’ve been posting a lot but things have just gotten really bad for me, i’ve been in this trial and over the course of a month but mostly the last two weeks i’ve lost basically all of the hair on my head. I…"
"Thank you so much for the updates!! I’m so sorry for your set back cassidymain but hopefully you figured it out and all that hair Will grow back now. None the less these posts and updates give me a lot of hope. Thank you :)"
"Thank you for the thorough and comprehensive update! We all appreciate you subjecting yourself to the trial. Good luck with it please keep us posted!"
"I believe it’s going into phase 3. I started 8 weeks ago before it was announced that they’d be going into phase 3. I’m excited, I’ve no hair on my scalp since I was 13, so seeing this growth is definitely exciting "
"That’s amazing news! I’m so happy there’s so many treatments being considered. Let me know how it progresses, i’m hopeful for you :) is this the last phase? what "
"Hi Chris! warning:this is going to be long winded
Sorry i haven’t already updated, i forgot i even posted this haha. I’m also currently in the midst of a crisis regarding this subject so it seems like the last thing i want to do is make…"
"Hey Cassidy,
I'd love to see an update to your experience on the trial to date, as I'm sure many other members here would.
thanks!"
Profile Information
- Relationship Status:
- Single
- About Me:
- I wasnt sure whether to put alopecia totalis or universalis because ive lost 99% of my hair but i still have some eyebrows, upper eyelashes, armpit hair, and some pubic hair.
Edit: All my eyebrows and eyelashes have grown in since i wrote this. dont have arm and leg hair or head hair, only very short fine white hairs that havent gotten any longer on my arms and a bit on legs, none on head, lost a small patch on my pubic area awhile ago and that is growing in some.
Saw this growth after treatment for chronic ebv/lyme. Am getting second treatment soon and will see what happens :)
- Do you have alopecia?
- Alopecia totalis
- Are you age 18 or older?
- Yes - I am 18 or older
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