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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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Football fan thank you I agree we all know more than the doctors at this point because were all helping educate each other.
I fully agree that I weaned too quickly and too extreme and I wish I had seeked out opinions before just trusting the one doctor as now everyone is telling me that they think I went to down too quickly.
Thanks so much for your positive thoughts that I will get everything back. I’m trying not to get scared. so far just the one patch. Thinning of lashes and shedding of about 150 hairs per day.
Keep you guys guys posted and thanks for the encouraging words!
x
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Hi!
I know Steve on this site has some medication stuck in customs he lives in Scotland.
Hoping he will let us know soon that it’s been released fingers crossed.
The current batch of beacon medications expire in February 2021.
Based on the expiration date of the different batches I have stockpiled from Beacon they seem to be manufacturing them every three months.
I would try for an order of about 20 boxes and maybe ask Beacon if they can write “medical research” on the content sticker?
Just a thought..
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Permalink Reply by magmck on
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Nicole
thanks so much for your response. I’ll do that. Having followed your journey I’m certain this setback you are facing will resolve itself ! I’m sure if you increase your dosage it will steady itself. Maybe it’s about staying on the level You are on a bit longer and stabilising. Or perhaps there will be the occasional period for all of us where hair will shed and resolve itself. However this medication works for you and will continue to - so keep breathing and moving forward and lots of people will be thinking of you x
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Hi Nicole , hopefully this is just a temporary setback and the spots will reverse upon the increase in mgs. Just a question regarding beacon. I ordered last week and made a payment. I’ve heard nothing about payment receipt confirmation or EMS tracking info etc. is this typical of their aforementioned lax customer service?
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Hi Sheila
do you have more info on the GP in Ireland ? I’m Ireland based too and it would be a lot more satisfactory being on xeljanz if I had medical monitoring while using the drug. Thanks in advance
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Hi Bibby it’s dr Catriona Ryan. I think there is a thread by Dublin books or hellopecia She’s on holiday from July - November however she has a partner available who can prescribe Tofacitinib.
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Permalink Reply by Maud Veloso on
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I live in Lisbon. How can i buy tobacitinib? In my case, I have AA AND LUPUS that medicine will serve to me?
Tobacitinib
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Hi All,
Updating you.
As you know, taking my dosage down to 10mg per day caused my hair to shed and to develop a patch which I noticed after 2/5 months on the reduced doseage.
I have now been back up to 15mg for 2 weeks and 2 days.
Shedding is still happening. Hair is all over the place like the old days.
Lashes are about 50% gone.
Patches are back on my legs and pubic hairs and brows have thinned.
My patch is much larger and now i have found 2 new patches and lots of diffuse thinning.
Pics attached
Praying that this resets soon.
Learn from me and DO NOT take your dosage down as extremely as I did. My doctor was WRONG.
This weaning should have been MUCH slower and was done far to soon!
thanks guys,
N
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hello nicole I'm sorry and I think you have to stress even more I was also thinning a month ago I advise you to make a bolus of solumedrol it has totally calmed the fall and regrowth
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keeping my fingers crossed the 15 mg kicks in real soon.
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