Carlie
  • Female
  • Newcastle, CA
  • United States
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Carlie's Discussions

Latest on LDN? Any new users?

Started Oct 18, 2017 0 Replies

I have had Alopecia Totalis for a year. I started LDN about 45 days ago and I'm pleased to say that I have little vellus hairs all over my head. I'm also using minoxidil 7% with a steroid topically…Continue

The continuous search for help.....

Started this discussion. Last reply by Carlie Sep 25, 2017. 3 Replies

Hello everyone,I have been reading your posts for over a year now and finally decided to join in. I am 66 and last year I lost all of my hair, out of the blue, over a period of 1 week. I have a close…Continue

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Latest Activity

Carlie replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Yes, it does help. I will give it a try. I feel like my hair is very fine and thinner, but seems to be thickening with cuts. I still wear my wigs if I'm in a hurry and don't feel like fixing my hair. I'm avoiding coloring and I'm…"
Dec 12, 2019
Carlie replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Are you using an over counter minoxidil or prescription strength? Thanks Frida, you are always so helpful."
Dec 11, 2019
Carlie replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"I suggest you stop looking, I know it's hard but unless you find hair falling out you're just causing yourself extra stress. I know it's hard, but I never look for bald spots, I get that burning sensation at times when my head feels…"
Dec 11, 2019
Carlie replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Hi Frida, are you still using any topical shampoo treatment or minoxidil? If so how often?"
Dec 10, 2019
Carlie replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Looks exactly the same to me."
Dec 10, 2019
Carlie replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Have you tried pulsing steroids? 300mg once month for 3 months."
Dec 6, 2019
Carlie replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"I would have my dermatologist do a biopsy to make sure it's alopecia."
Dec 6, 2019
Carlie replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"I certainly don't know answers but I do know that once an autoimmune disease is triggered it's hard to stop it. Like trying to stop a bullet. It's not like cancer where the cells can be removed or killed off.  I'm hoping…"
Dec 3, 2019
Carlie replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"I started taking the Xeljanz about 1 year after losing all my hair. I got the first 3 months through pfizer and then I went to Mexico and bought another 5 months supply. At that time I was taking 10mg a day. After 5 months of no growth, not even…"
Nov 27, 2019
Carlie replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Like I mentioned, it took a year before I was referred to a Dr. that would help me. I had several that knew very little about the disease and prescribed topical steroids along with kenalog shots. I was, finally, referred to a specialist at…"
Nov 25, 2019
Carlie replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Ricky, yes the vellus hairs will start to change. My doctor followed the Dr. King's Protocol for 300mg dose once a month for 3 months, No I did not have any side effects."
Nov 23, 2019
Carlie replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"My doctor has recently advised me of the blood clot concerns too. I only did the pulsing for 3 months and yes that's what jump started my growth. My doctor, also told me that the study regarding the blood clot showed up in a very small percent…"
Nov 22, 2019
Carlie replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"This is from 12/2017. There was nothing,"
Nov 22, 2019
Carlie replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Hi Vanessa, That picture was after I did the prednisone pulse. I had nothing before that after 5 months of xeljanz, 10 mg a day. I started the 20 (16.5) of the Beacon Xeljanz around the same time as the pulsing. I had traveled to Mexico to buy the…"
Nov 22, 2019
Carlie replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"There should be a Dr. he can refer you to that knows King. My UCSF Dr. knew all about him. https://www.concertpharma.com/patients/expert-video/"
Nov 22, 2019
Carlie replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"I was on xeljanz for 5 months before I asked my Derm for a steroid pulse. I wasn't seeing any results either but after the pulse, my hair came in really fast, eye lashes and brows returned too. see the pictures I posted."
Nov 22, 2019

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Relationship Status:
Single
Do you have alopecia?
Alopecia universalis
Are you age 18 or older?
Yes - I am 18 or older

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