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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 WheresMyHair on
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I had AU since age 10yrs old, I will be 30yrs old in January. I started 5 mg 2 x a day March 2st, 2020.
After 6 months exactly, I have eyebrows, eyelashes, a mustache, pubic hair. No hair on my head yet.
I was just about to quit, because my bloodwork is normal but I started getting pain in my lymph areas, groin, and under arms, but I went for a LYMPHATIC MASSAGE and took some lymphatic drops last week, and all the lumps and pain went away same day.
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Hi Nicole,
Can i ask, when you started to taper down, how long before you noticed a shed?
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Permalink Reply by RossGraham on
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Hi all, I’m new to the group! Im 29, live in the UK and have had AU for around 2.5 years now although in the past year I have noticed some fluff on my head and beard which I shave! I have ordered my first Tofa from Beacon and plan to start on Jan 1st, in the UK this is not a treatment that is verified for Alopecia yet so I am confused as to whether I declare this to my doctor or not... however I think I will in order to get my bloods tested and cholesterol monitored.
Does anyone have advice for dosage? I have seen 10mg daily as a good start however I think I may start on 15mg for 3 months then increase to 20mg if no change. I am also to be using topical minoxidil as well as Bimatoprost for my eyelashes and brows.
Thank you in advanced reaponses. This website has been a real god send just when I needed it most.
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Permalink Reply by NicoleT on
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Hey Ross!
I would start at 15mg per day.
5 in am and 10 in pm.
and yeah get Baseline bloodwork done and then do it again in 6 months.
good luck!!
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Thanks Nicole, I’ve sent you a friend request I hope you don’t mind! Would be ace if I could ask a few questions.
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Hi Ross I’m in the UK too, have sent you a friend request, happy to tell you how I dealt with my GP.
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Thank you! I’ve accepted and sent over a PM.
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Hey, I’m based in the uk too, would appreciate knowing how you dealt with your gp? I saw a dermatologist and he said he would not monitor me due to the risks of tofa. Haven’t tried with the gp yet. Good news is derm said ritlicitinib drug and drug are soon to be approved and may be available in the next 2-3 years.
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Hey guys! Ive been following this thread for a couple years no. I have alopecia on my face and body so I started Xeljanz in September of 2019 and had all my hair back within 7 months (Normal Density and Color)...which was awesome! I stopped in November 2020 just because I dont know how safe Tofacitinib is and wondered what would happen with my hair. Well it all fell back out. Ive got a pretty huge supply of Xeljanz and have been thinking about getting back on it. My question to you guys is what is you experience with it health wise. Has anybody had suspicious bloodwork or any severe side effects or outcome? I would appreciate any feedback. I just want to make sure im not putting myself at medical risk while taking Tofacitinib. Thanks everyone!! :)
Oh and HOLY SHIT Nicole. Your hair looks amazing!!!!
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Hi, my son is 19 and he was prescribed Olumiant 4mg / day but insurance rejected Pre Authorization stating that FDA guideline is 2mg per day.
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Permalink Reply by Apple on
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I DO BELIEVE YOU WERE THE FIRST PERSON THAT SAVED MY LIFE, HOW ARE YOU. I CAN ONLY GO ABOUT 1 WEEK WITHOUT XELJANZ, 20 DAYS AND I AM BACK TO NO HAIR. I CAN NOT GO BACK. YOU ARE SUCH A BEAUTIFUL PERSON. I KNOW FROM WORKING IN THE BURN UNIT, THAT IF YOU DO NOT HAVE HAIR PEOIPLE LOOK AT YOU LIKE A MONSTER, HORRIBLE HOW SHALLOW PEOPLE ARE, THERES SO MUCH MORE TO A PERSON, BUT I THINK WE ALL DESERVE HAIR. YOU WERE THE PERSON THAT TOLD ME ABOUT BEACON AND MED FROM INDIA, BUT THIS TIME AROUND ON INDIAN MART I COULD NOT FIND BEACON I WONDER IF THEY CHANGED THEIR NAME. I USED WELLWORLD BOUGH TOFAJAK FROM CIOLA IN INDIA, OF COURSE IM NERVOUS. BUT I HAVE NEVER HAD ANY ISSUES WITH MEDS FROM INDIA, THEY ARE DEFINETLY HONEST, MORE SO THAN MEXICO. HAHAHA IM MEXICAN I SHOULD NOW THEY SELL SNAKE OIL. LUV YA!!!!
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