Patchylatchy
  • Female
  • Wheaton, IL
  • United States
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Patchylatchy's Discussions

CTP-534 What is your experience.

Started Feb 4 0 Replies

Hi everyone, I was hoping we could use this thread to discuss CTP-534. The most attended thread on alopeciaworld is the one related to xeljanz. Could we please list here all CTP users what is your…Continue

How soon after your first spot did it take to become AU?

Started this discussion. Last reply by San Fe Jan 19. 11 Replies

It took me a year from first spot till I lost everything. When did you have your first spot and when were you officially AU?Continue

Xeljanz, CTP 534 when will they be approved

Started this discussion. Last reply by Jade Oct 21, 2020. 3 Replies

Hi Everyone,Wondering if anyone knows what is the difference between Xeljanz and CTP-543? I know both are JAK inhibitors but does one have less sideffects than other? Is one more suitable for AA?…Continue

are my follicles dead?

Started this discussion. Last reply by Nerida Nov 4, 2020. 2 Replies

hello everyone, just wondering can a doctor tell if the hairfollicles say on brows or lash line are dead or not (meaning at some point there is a chance they may grow back)? does that need a biopsy?…Continue

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Latest Activity

Patchylatchy replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"thank you. Its good that it continue to work though. Does your doctor know when will Xeljanz be approved or any medication?"
16 hours ago
Patchylatchy replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Is it possible by taking Xeljanz for quite some time that after stopping it or decreasing the dosage the alopecia would be worse possibly venegence mode? thank you"
Apr 5
Patchylatchy replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Hi all. Would you say we have a very strong immune system that should be calmed down or a very stupid immune system?"
Mar 29
Patchylatchy replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"I totally agree. It is quite concerning given that we have an overactive immunesystem."
Mar 24
Patchylatchy replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"from my understanding it takes at least 3 months to take effect in the body. You are on the right track. Hopefully things will be much better soon.  "
Mar 8
Patchylatchy replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"How long have you been taking it? What is your doctor plan? Does she was to wean you off since u don't have AU but only AA?"
Mar 7
Patchylatchy replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Hi Sam. It's really strange that they laughed because jak inhibitors are the future for alopecia and according to my understanding something will be approved in 3 years or so. Maybe not xeljanz but another jak inhibitor. Would you mind joining…"
Mar 2
Patchylatchy replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Hi everyone, hope someone can help me. I was on 10 mg for quite some time and last month have been on 5 mg for one month. I have not had any loss or spots. Has anyone suceeded in staying at 5mg with no loss or maybe minimal loss? "
Mar 1
Patchylatchy replied to mtran2000's discussion Anyone else have nothing work for them?
"how about trying ctp534?"
Mar 1
Patchylatchy replied to mtran2000's discussion Anyone else have nothing work for them?
"Hi mtran, do you have any updates?"
Feb 17
Patchylatchy replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Has any of you accompanied xeljanz with strict diet changes such as gluten free ? Has that helped?"
Feb 15
Patchylatchy replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Hi Noelle. Is it possible that taking it for so long the body somehow becomes immune to it? I don't know if that even makes sense..just trying to think. In this case would it be better to switch to another jak inhibtor?"
Feb 15
Patchylatchy replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Hi Kevin, why do you think its 2024 for approval! Thanks"
Feb 8
Patchylatchy replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Why 2023 if they are already Phase 3"
Feb 6
Patchylatchy replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"That is really long time"
Feb 6

Profile Information

Do you have alopecia?
Alopecia areata
Are you age 18 or older?
Yes - I am 18 or older

Comment Wall (3 comments)

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At 12:35am on August 17, 2017, Niece said…

sorry PAtchylatchy just saw this message..very late! You asked about my AU and if I had AA first. No, I did not. First noticed hairline thinning and within about 3-4 months lost all my hair. Its been over 3 years now..getting easier but to be honest I still struggle with alopecia. Have my hopes set on a treatment/cure in the years ahead. How are you doing?

At 3:45pm on December 21, 2016, D Costa said…
Postpartem spots got very progressive. I started using Thymuskin and feel it really helped slow the process. I'm currently about 50% hair loss right now (same going on five years). Hope this helps.
At 5:49pm on December 19, 2016, D Costa said…
Hi my profile probably needs to be updated. I gave birth back in 2011. I was 19 when I noticed my first spot though. Congratulations on your pregnancy!
 
 
 

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