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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
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Permalink Reply by rudrafroo on
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Propecia without a prescription - https://qualitypillsprovider.com I had heard of Propecia pills for hair loss but had never tried them until I saw that I was losing too much hair. I spent several months following the treatment and quickly saw the results I wanted: strong hair and less hair loss. I highly recommend Propecia.
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Really appreciate the update and congrats on the amazing progress! You've been a huge inspiration and resource to people like myself who only discovered treatment options like tofacitinib from this site. I would have also had no clue on obtaining the generic version from overseas without your help. :)))
I've been on 10 mg for about 6 weeks now, tempted to bump it up to 15 mg like you did since I'm on the Beacon generics. I might stay on 10 mg for 3 months and see what happens. thoughts?
Question for you, how often did you get your bloodwork checked by the doctor?
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Permalink Reply by NicoleT on
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To sorry for the Delayed response here.
As far as upping the dosage, my doctor likes to wait until about five months to increase from 10 mg to 15. But that being said we know that the Beacon might be a slightly less dosage than the name brand so even if you bumped to 3pills it still might be closer to 13 mg per day.
As for blood work,my doctor looked at it when I started ( I had a recent labs to show him because I have been trying to figure out what was wrong with me) to make sure I was healthy to start the meds and then he didn’t look at my blood again for a year and everything was fine.
So in short, Columbia does the bloodwork annually.
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That’s awesome!!! So happy for you!!!
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Hi Nicole and well done, your post is so inspiring. When you took the series of profile photos you stated there was no growth until 5 months? was the no growth at all? or was there vellus hair that had not gained length or pigment? I am coming up to 4 months on tofa and I have loads of vellus hairs growing in areas, but some places nothing. Was this your experience.
Your hair looks fab, relax and enjoy
Peach Fuzz
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HI Peachfuzz!
So i actually had the vellus hairs starting maybe around 3 months. Then right about 3-4 months i starting making everyone in my family come look at my one brown hair lol. Then 2 then 3 then 4 then a patch of brown then another until the brown finally spread across my entire head. I was like a leopard with brown and white spots.
Heres a pic of me at 4 months...You can sooooort of see the little brownish spot at my temple. thats where the pigment started to come in for me.
Also I was getting my eyebrows back at this point. And I actually started to go out without a wig at this point, but with a ballcap. which i cant believe looking at these pics...
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Thanks for the info! in those shots you have a lot of vellus hair, had you been shaving it or you just let it grow from scratch. You have responded really well :-)
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Hey Nicole, I'm so happy for you ! :)))))
You're the sweetest and kindest soul, always ready and willing to help everyone. You've shared and documented your journey so well to help others, and even found an alternate low cost source of X that's given so many people here hope and a chance at a normal life. Thanks for being here and everything you've done for all of us.
Hope the taper goes really well. You've earned your wings and deserve nothing but the best life has to offer.
xoxo
TC
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You made me cry TC!! Xo
Its my mission to help as many people as possible in this situation that can feel so so scary and hopeless.
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Comment was so beautiful and nice have to say it twice. You give hope, can feel the love, and yes Nicole, I'm so happy for you ! :))))),
"You're the sweetest and kindest soul, always ready and willing to help everyone. You've shared and documented your journey so well to help others, and even found an alternate low cost source of X that's given so many people here hope and a chance at a normal life. Thanks for being here and everything you've done for all of us."
I could never afford the medication . Today I was able to buy 20 boxes bcuz of you
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