IcarusAlopecia
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  • New York, NY
  • United States
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Latest Activity

IcarusAlopecia replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Hi Christopher's Mom! Not really. I mean I had like 1 or 2 hairs per day but nothing like when I was like full on shedding back in Sept. 2016. I will def do a year end update in December."
Oct 2, 2017
IcarusAlopecia replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"With food but i don't think it makes a difference, really. I also drink alcohol. I know you're not supposed to but I'm a social person and go to bars, parties, etc. I usually have anywhere from 2-4 glasses of wine per week."
Oct 2, 2017
IcarusAlopecia replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"The standard dose is 5mg twice per day."
Sep 30, 2017
IcarusAlopecia replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Hi DJ, I started on the standard dose of 2 pills per day. I never went above that. I started to respond rather quickly in about 5-6 weeks.  My doctor is the one that suggests that if by December all is good then to drop to 1 pill per day."
Sep 29, 2017
IcarusAlopecia replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Hey Suzie, I haven't experienced any exhaustion no more than usual. I feel these days, everyone is exhausted, lol.  I'm really good about getting 8 hours of sleep (at least Monday-Thursday) and I exercise every morning. I don't…"
Sep 29, 2017
IcarusAlopecia replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Also affiliate links. People don't purchase anything from posters who are trying to cash in. Please report all users who post affiliate links to products."
Jul 31, 2017
IcarusAlopecia replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"You're actually just posting affiliate links which is against the policy here. I wouldn't advise anyone purchase anything from the links provided by George Buckner"
Jul 31, 2017
IcarusAlopecia replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Nice results!! Congrats, I'm so happy for you! I just restarted Xeljanz and hope to continue the results. I am not doing cortisone shots as I feel it's not necessary now since I have no patches. Re: Weight gain. Just out of curiousity are…"
Jul 25, 2017
IcarusAlopecia replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Hi Patches, I will definitely put something together.  Sorry for the late reply. I didn't get any notification of replies and I haven't checked the forum. I'll  piece together something by this weekend."
Jul 25, 2017
IcarusAlopecia replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Sorry for the late reply. No, it's not a phish reference. Although, they are in town for the bakers dozen :)."
Jul 25, 2017
IcarusAlopecia and Patchesforlife are now friends
Jul 10, 2017
IcarusAlopecia replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Thanks.  I def would want to assist those who need it. I had been through a medical state appeal before for my surgery, so I knew the "buzzwords" to use in my letter (quality of life, etc.).  I also included my own studies I…"
Jul 10, 2017
IcarusAlopecia replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Well, how about this! I got my FedEx'd 3rd level state appeal decision today.....APPROVED! I nearly fell over! I was not expecting this at all.The letter outlined my 9 years of Alopecia, supporting docs and mentioned to peer reviews and…"
Jul 10, 2017
IcarusAlopecia replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"I work in spice and food industry. There is something called a bait and switch. For example, you order from these chinese vendors and they will send you a sample to test. The sample comes out fine and you place an order for 100 pills. Those 100…"
Jul 6, 2017
IcarusAlopecia replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Hi, Just my opinion but I would never, ever, buy any medicine from Alibaba/Aliexpress and certainly not from China. The quality control is simply not there and one is just opening themselves up to complications from possibly adulterated…"
Jul 6, 2017
IcarusAlopecia replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Thank you, Suzie!  Fingers crossed my appeal is overturned."
Jul 5, 2017

Profile Information

Relationship Status:
Single
About Me:
Battling AA for 6 years.
Cortisone shots and some topicals.
Started Xeljanz 1/10/2016
Do you have alopecia?
Alopecia areata
Are you age 18 or older?
Yes - I am 18 or older

Comment Wall (2 comments)

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At 10:40pm on June 9, 2017, AlexRodriguez13 said…
At 7:24pm on June 8, 2017, AlexRodriguez13 said…

Hello IcarusAlopecia,

I have read your comments and i think I have very similar symptoms as you. I have had alopecia since I was 10 yeas old (now I'm 24) but from 14 years old to 18 years old, I recovered the totality of my body hair. Now I'm struggling with my scalp hair, eyebrows, beard, arms and some other random parts in my body. I have maybe 65% of my scalp hair, 35% eyebrows, 50% beard, no arm's hair, and 90% of hair in my legs. It has always been an obsession of mine the loss of my eyebrows. Very much more than the loss of hair in other parts of my body. I will be traveling in a couple of months to meet with Dr. King who prescribes Xeljanz. I want to ask you some questions if its ok with you.

J.

 
 
 

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