"Thanks for info Ahmed !
I'll keep an eye out for your next update at 9 months.
You must be buzzing after experiencing such a positive result."
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Scott James's Discussions
Transition from Alopecia Areata to Universalis
Started this discussion. Last reply by Courtney Mar 13, 2012. 7 Replies 0 Likes
HiFor those of us that have gone from alopecia areata to universalis how did the transition occur for you ?For me it was about 9 months of AA in which the patches appeared and slowly got bigger. None…Continue
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"Hi Ahmed,
Delighted for you ! ... A truly inspirational success story.
A few questions .....
Do you take the Tofacinix with or without food ?
What brands of Vitamin D & Biotin do you take ? ... Do you also take these with or without food ?"
"Hi Ahmed,
Thanks for sharing. Amazing results !
How long had you been AU for before taking Tofacitinib ?
Did your journey to AU stem from AA patches that joined up ? .... Or a uniform shedding of hair ?"
Profile Information
- Relationship Status:
- In a Relationship
- About Me:
- In the end, it's not the years in your life that count, it's the life in your years. But when it is my time, I want to go peacefully like my Grandfather did, in his sleep -- not screaming, like the passengers in his car.
- Do you have alopecia?
- Alopecia universalis
- Are you age 18 or older?
- Yes - I am 18 or older
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Comment Wall (3 comments)
- At 6:15am on September 5, 2017,
Frida Rupert said…
- Hi Scott,
It's still a pretty new drug and many dermatologists don't seem to suggest it (based on cost partly). If you have acute rheumatoid arthritis then you might qualify for the pbs but if not it's $$$...$1300ish a month... I am. Sry lucky as my sister is a diplomat and her last posting was to India and I was able, through her doc there, my immunologist here, and the help of my sisters contacts and legal knowledge buy and import 3 months at a time from there where it is about $380 us per month supply. I've got 12 months waiting to come over- have started on the expensive Australian stuff as I didn't want to wait for all the legal work to get done. Into my first month. It's slow but I think I'm seeing progress- it's halted my body hair loss, some regrowth on eyebrows and I think I'm starting to see the very beginnings of baby hair on my head (though I try not to be too optimistic). I think to see good results it will be at least 6 months. If I can advise anything it would be to go to an immunologist- they seem to be better at treating the steroid resistant alopecia. Anymore questions don't hesitate to ask.
Frida
- At 11:45am on February 19, 2012,
JeffreySF said…
HI Scott,
Welcome to Alopecia World.
Jeffrey
- At 6:19pm on February 6, 2012,
Kim Culberson said…
Shoot.....I just spent half an hour sending you a message and went to edit a spelling error and erased the whole thing!!! Here I go again...
Sorry it took so long to answer you, but I was on vacation in Mexico.
I started taking 8 mg of methotrexate for rheumatoid arthritis in my fingers. 8 pills all at once, once a week! I switched to .7mg once a week by injection as the pills were bothering my stomach. I was at the Dr. today and told her about your question and she said that just because it worked for me doesn't mean that someone else will get the same effect. Also this is a chemo therapy medication that they use to treat luekemia and arthritis as well and can have major side effects. It is hard on your liver, so no drinking alcohol, and blood work once a month. I was AU for 7 years after major surgery with major blood loss. It took about 3 months of taking the medication before I started noticing my hair growing back..not just in spots, but fine baby hair all over my head. I never got my eyelashes or eyebrows back and still don't have to shave my underarms or bikini line..ha ha... My Dr. wasn't sure any Dr. would prescribe this med just to try to grow hair back. I only started it for my arthritis and just happen to have it lower my immune system enough to put the AU in remission
If I stop the med for anymore than 3-4 weeks, my hair starts falling out in spots. Usually along the hairline at my forehead and the back of my neck and over my ears. Although right now I have about a dime size patch right on the top of my head. I get cortisone injections into the spots and it takes about 5 weeks for them to start to fill back in again.
Let me know if you have anymore questions.
thanks Kim
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