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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 singh on
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Hi Nicole and Shiela,
I just want to say I traveled from Liverpool Uk to New York to see Dr Bordone and she is lovely.
I feel reducing the dose after 1 year may not be enough for your immune system to go into remission, as Dr kings first patient after 8 months reduced/stopped and I heard he lost most of his hair.
kind regards.
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Hi Singh
hope youre doing well. Did you have to travel to USA as there was no support for you in the U.K.? My sister lives In Liverpool UK
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Permalink Reply by NicoleT on
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Hey Singh and All
Totally agree with you. I think dr fil, as much as I like him personally, ill advised me to taper so quickly.
I now have a large patch and significant shedding after dropping the doseage.
Just now I put my hands through my head and 60 hairs come out.
I saw bordone on Thursday and she had me go back immediately to my previous dose of 15 per day. She said this will be my dose basically forever or until I’m much older when my immune system naturally slows down. She says that otherwise I’m just a “sitting duck”
My labs look good. White blood cell count a little high but that is always the case with ppl with autoimmune diseases.
Hoping I stabilize quickly. Not seeing any other patches yet but definitely thinning.
Keep you posted.
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Hi Nicole
I’m so sorry to you about this large patch, you will be okay when you come back to 15mg , are you taking Tofacinix or xeljanz ?
Best Regrds
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Thank you Sultan.
I’m on tofacinix.
I do also have a couple bottles of xeljanz unopened.
Im definitely feeling som side effects taking my doseage back up.
Sore throat but I’ve kicked it with 50,000ui of vitamin d per day and salt water gargle. Also headaches but seems better today.
Praying the shedding stabilizes in the next couple weeks.
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hello nicole yesterday I made my first bolus solumedrol 500mg infusion in the hospital I have two days left for this month.
since 1 month I pass tests for a suspicion of venous thrombosis I did all the tests d dymere negative and Doppler ecography nothing reported.
I advise you to add in the blood tests d dymere to eliminate any risk of clots in the blood. in France all the tests and appointments doctors are reimbursed you just have to pay an insurance per month 30 euro that I pay. m
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Permalink Reply by Sad_Rapunzel on
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nooooope.. she's not helpful at all :(
as soon as you pay for her consultation she'll forget about you and you will call to the office on daily basis, trying to reach her.
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Permalink Reply by Rach1992 on
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Hey Nicole, how many pills does someone need to be crushed for the topical per month? I have had AU now for 5 years, AA for 1 year before that. I'm 26 and I am ready to turn to trying the topical treatment. I've "accepted" it at this point, as much as someone who has something very visible that they dislike... I would love to eliminate this problem for my life if I am lucky enough to respond well to the treatment. :) Thank you for all of your insights and sharing your story here!
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- Just on my way home from NYC and had appt with Bordone and got my free 3 month prescription at Carnegie pharmacy ( they were awesome). She has me on both the 11 mg from beacon and the 5 mg from Pfizer. I’ll post results if I get any but I’m hopeful!
- Thank you Nicole!!!!
sheila
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Hi, what insurance do you have? I tried to get 3 month supply from Carnegie pharmacy and they could not figure something out with my insurance. I had a prescription from Columbia and a co-pay card. I have Cigna with Express Script.
Good luck!
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Last November I had the copay card and a prescription and couldn’t get my 3 month supply either .Went to CVS pharmacy and have express scripts anthem blue cross.After about 25 phone calls gave up because it was the end of December.Also talked to the Pfizer people no one could help me.
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