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PF 06651600 Trial
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 study and being considered for an extension. Today is my first day taking the medication.
Replies to This Discussion
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Permalink Reply by AM on
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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 through the pre screening right now
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Hi AM, accept my friend request and i’ll inbox you, or would you want to talk somewhere easier like instagram? i’m rarely signed into this website but id be more than happy to talk and answer any questions.
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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!
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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 a post but i think it’s important. So good news and bad news, this drug worked amazingly as far as bringing my hair back with almost no side effects. The first few days of taking it i noticed some back aches that i do think we’re from the meds but they went away as fast as they came and never amounted to anything. Other than that i noticed some worsening acne but i’ve struggled with that for a long time anyway and it’s nothing unbearable. I noticed little hairs forming the first two to three months and pigment starting in three to four months. thats a rough estimate, but once it started coming it came fast and by six months it was basically completely back, i had a couple stubborn small spots but they were filling in with time and not too bothersome. Completely the same hair texture and color and everything. Honestly nothing less than a miracle. For background i’ve had alopecia areata since i was 15 years old which slowly progressed to totalis by the time i was 18/19 and though i never completely lost all of my eyebrows and eyelashes i lost most of my eyebrows twice and half of my eyelashes. No leg hair or arm hair and spots in my pubic hair. Armpit hair was never affected, of course the only hair i shave. But i had no hair on my head for about three years and most of my hair was gone for longer than that. This brought back my eyebrows as well which took a bit longer than my head for some reason but still back nonetheless. My leg hair was the first to come back and then my head, then my eyebrows and then my arms however my arms never got to the point of maturity. I’ve been on the drug for seven and a half months now.
Okay here’s the bad part. A month ago i started shedding, nothing super major at first but the spots that were struggling seemed to be losing hairs and it definitely concerned me but it didn’t affect how anything looked and could’ve just passed by and been okay, however, the shedding only worsened, my spots got significant bigger and i started losing all over my head. I would say in two weeks i went from being able to go out in public to having to cover my head again. I’ve been in a total despair. I actually shaved it last night because the length isn’t doing me good anymore. I do still have hair though. Its extremely patchy all over and i have a few spots of total alopecia but a lot still has prickly hair. I’m not sure when the shedding will stop but i’ve gone in for two appointments and there’s been a general consensus about what’s happening. I started taking birth control a month before the shedding started and was on it two months by the time the shedding got really bad. The dermatologist told me the immune system is really fragile and anything can tip it over the edge. My body really didn’t like the birth control and this of course is partly how it’s manifesting. Now this is a dosage study so everyone gets a different dose and i have no idea what i’m on, i could easily be on the lowest dose and being on a higher dose could have lessened this blow, i do think that even being on these drugs you have to stay away from things that can trigger the disease. I’ve definitely learned my lesson with that one. Now i don’t know how much hair i’ll end up losing but my dermatologist thinks that once my hormones go back to normal things should head in the right direction again and my hair should regrow. Right now i’m in a waiting stage to see how this progresses. Even with all of this though i really advocate for this medicine so far. I think my downfall is being in a study where i don’t know what dose i’m on and i can’t have it individualized to my needs. Besides that, this has worked very well and very smoothly with little to no side effects and i think/hope it will get approved. I’m also really hoping that in a month or two things turn around for me, and i will keep you updated on that. I don’t think most people are at risk for this happening, but it’s still something to be warned about. If i had never taken the birth control, i would have nothing but good things to say and i’m sad i have to break this news but i think it’s good to know what can happen. Also birth control triggered my autoimmunity but that doesn’t mean it will for everyone. Everyone has different triggers. Anyway if anyone actually read this and has any questions i’ll be happy to answer!
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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!
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Thank you! I’m just glad i can help :)
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Permalink Reply by serg navaro on
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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.
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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
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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
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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!
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Permalink Reply by Fingers_Crossed on
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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 :)
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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 have a lot of hope! I think we will all have medications that change our lives sooner rather than later. I’m still waiting for things to turn around but at least now i know i can grow hair! and normal hair! I won’t have to suffer forever and neither will you :)
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