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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 NicoleT on
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HI!
I would not increase. Id stay at 16 per day.
i think we are just going to go thru bouts of small spots even on our proper dosage in times of stress or hormonal fluctuation.
i always have a couple small spots in some stage of regrowth.
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Permalink Reply by momx2x2 on
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Ok, that makes me feel so much better. Not that I want you to have spots but glad they come and go for you. I have appointment with Bordone next week to see what she says and I had all my test recently and everything looks in good order, but you’re right I’ve been under a lot of stress lately and that’s probably what’s causing it.
thanks Nicole you’re the best and your hair looks great!Sheila
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Yeah it’s stressful times!!!
our bodies are going to feel it no matter what!
let me know how the appointment goes. Say hi to bordone :)
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Permalink Reply by Nawar on
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Looking great thanks for the update , keep us updated this encourage us to continue on the medicine
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Hi Nicole, thanks for this post.
I recently posted about my experience being on CTP-543 which is the Jakafi version. I was wondering if you're still on a tapering off schedule. I asked my dr at Stanford and he doesn’t have one for me its either on or off. I’m off recently and have now severe ezcema all over my face and body which he is saying is a rebound effect of being on jak inhibitor. I wonder why dermatologists don't have similar approaches with this type of medication.
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HI Jade,
How interesting..i see they are marking this drug toward AA.
I'm doing my own tapering schedule.
Basically im just reducing my nightime dosage by half, just 2 nights per week..
BUt i think i will likely just have to stay on my doseage for the forseeable future.
So you just went completely off of it with no tapering? and you have this severe ezcema?
How long have you been off of the meds?
Would love to see your original post before i ask you questions you have already answered :)
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Is there a new contact for Beacon???
I emailed mouree@beaconmedicare.com.bd 4 days ago and haven’t heard back. I’m running dangerously close to running out of tofa.
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mouree@beaconmedicare.com.bd
sometimes takes a while but yes still the right contact! I just got a shipment.
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Check your spam. Her emails ended up in my Spam folder. I found out, when I used a different email address and Mouree told me that she replied to my initial email.
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