Alopecia World
www.alopeciaworld.com
Update: 1 year on Tobacitinib!
HI All!
March 1, 2019 marked my 1 year Tofacitinib.
Either Xeljanz and or Generic Tofacinix from Beacon Pharma in Bangladesh.
Started on 10mg per day and bumped up to 15 mg per day in August of 2018.
I saw my doc at Columbia University in NYC on my 1 year mark.
He drew my labs and everything came back great!
I've currently been on 3 pills per day of Tofacinix (approx 15mg per day with probable slight dosage variation due to it being a generic)
My doc has me starting to wean off the meds, here is his plan for me:
I went down to 2 pills per day (10 mg per day) starting March 1,2019
After 3 months, if no shedding, no patches, he wants me to go down to 1 pill per day.
After 3 months, if no shedding, no patches, he wants me to try to go off completely.
Update on Pfizer Xeljanz co-pay coupon. The Co-Pay coupon is now 3 months FREE
You can use it once per year. It wasn't free for me last year, but it is now!
I called in and activated the coupon with Pfizer and next day walked out of the pharmacy in NYC with 180 free pills of Xeljanz. So I will be on the name brand for 3 months and then will switch back to my stockpile of Beacon generic.
No side effects. Current pics below. Last time I buzzed was Dec 16, 2018
Also a baseline pic from March 1, 2018
Thanks for all of your support guys and wishing everyone here healing in whatever way it comes.
Love of love,
N
Replies to This Discussion
-
Permalink Reply by Steve on
-
Hi everyone!
Hope everyone is doing well. Sorry, I have not posted on here in some time with my progress. Anyway, I have been on tofacitinib now for 8 months (October 2018) and I have all my hair back now! I got my first haircut in YEARS on Saturday and I was extremely anxious. I have continued to have zero side effects and I have had my bloods taken twice now and both have come back clear and healthy. Still currently on 15mg a day. I had an issue with UK customs with one order which meant that I had to reduce my dose slightly for a few weeks to make medication last. Thankfully the wonderful Nicole T helped me out and sent me some emergency medication - I will forever be thankful to her.
Attached are 2 photos from today and then 2 photo montages from when I started in October/December.
Hope everyone else is progressing well.
-
Permalink Reply by NicoleT on
-
HANDSOME!!!!!!
Wow could not be happier for you.
Thanks for the update!!
-
Permalink Reply by TC on
-
Congrats Steve!! You look great :)
Must feel amazing to be back to yourself. Enjoy every minute of it.
Nicole you're such an angel helping everybody. Thanks for being so wonderful.
-
-
Wow Steve you look amazing mate !! So happy for you man ! I remember us discussing about even taking xeljanz !
-
-
Hi Steve,
amazing progress i wouldnt have been able to tell that you were ever AU. Are you using branded or generic Xeljanz? Are you planning to remain on the medication indefinitely? I have been talking Xeljanz XR (11mg) daily for 3 months now. Prior I lost 70% hair on head, and on patches on body and lost entire facial hair was diagnosed AA 8 yrs ago. No my beard is 95% growth, full regrowth of body hair, but hair on head seems to be slower. I’d say I have 50-60% hair regrowth on head. I don’t know anyone personally with alopecia and curious what your experience had been when beginning the medication earlier on...
TS
-
-
Hi Steve
that’s great news you must be delighted. I also have Tofacitinib fromBeacons Nd would like to begin taking it. However I beed have the conversation with my GP and am worried he will say no. Is tie GP monitoring your blood ?
thanks fir your help !
-
-
Hi Steve, I am from London. Just started taking this medication 5mg once daily but it’s costing me a fortune!! Want to order from the same place you do. How do I do this? All help and advice gratefully received. Kind regards Vicki
-
-
Congrats, looks great!
© 2024 Created by Alopecia World.
Powered by
