Cassidymain
  • Female
  • Westfield, IN
  • United States
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Cassidymain's Discussions

PF 06651600 Trial

Started this discussion. Last reply by Cassidymain Oct 26. 12 Replies

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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Cassidymain replied to Cassidymain's discussion PF 06651600 Trial
"Thank you! I’m just glad i can help :) "
Oct 26
Cassidymain replied to Cassidymain's discussion PF 06651600 Trial
"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…"
Oct 26
Cassidymain replied to Cassidymain's discussion PF 06651600 Trial
"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!"
Oct 26
Cassidymain replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"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…"
Oct 13
Fingers_Crossed replied to Cassidymain's discussion PF 06651600 Trial
"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 :)"
Oct 9
chris_s replied to Cassidymain's discussion PF 06651600 Trial
"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!"
Oct 8
serg navaro replied to Cassidymain's discussion PF 06651600 Trial
"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 "
Oct 8
Cassidymain replied to Cassidymain's discussion PF 06651600 Trial
"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 "
Oct 8
Cassidymain replied to Cassidymain's discussion PF 06651600 Trial
"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…"
Oct 8
chris_s replied to Cassidymain's discussion PF 06651600 Trial
"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!"
Oct 8
serg navaro replied to Cassidymain's discussion PF 06651600 Trial
"Good luck!I Ive been on the CTP-543 study for 8 weeks now and its promising, I`ve had a ton of baby hairs growing all over my head. Hope these trials lead to a reliable treatment."
Oct 8
AM and Cassidymain are now friends
Oct 7
Cassidymain replied to Cassidymain's discussion PF 06651600 Trial
"Hi AM, i’ll inbox you "
Oct 7
AM replied to Cassidymain's discussion PF 06651600 Trial
"Hey Cassidymain - I recently got approached to be a part of this trial in Canada. I am not sure I want to do this as I am worried about the potential side effects... would you be okay to chat privately? I am based in toronto Canada ...and going…"
Oct 6
Cassidymain replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Thanks for the support Merry. I’m trying not to stress but it seems like my body doesn’t respond to this medication anymore and i’m not sure why. I haven’t heard of that happening to anyone else. I’m having a relapse in…"
Sep 30
Cassidymain and nb3689 are now friends
Sep 28

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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