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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 momx2x2 on
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I have insurance thru blue cross -MA and Express Scripts is pharmacy administrator. The man at Carnegie said their pharmacy couldn’t process for awhile, (not sure when exactly as he didn’t say) but then they passed an audit and now can distribute again. I guess so many of us were going there they had to make sure all was legit. Maybe that was problem?
I think the guys name was Dave at Carnegie, he was the one that talked the girl thru the process and said it would get rejected by insurance and then he’d get it thru. I was so nervous I didn’t pay too much attention. Might be worth trying again.
sheila
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Thank you Sheila! I leave 150 miles from NYC and it's cheaper to get meds from Bangladesh than travel to NYC. I just wanted to understand the problem.
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Thanks Nicole, i just make appt with Bordone. What mg do you order from Beacon, 10 or 15?
Sheila
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Permalink Reply by NicoleT on
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I take the 5mg pills.
Bordine will likely start you on 10 mg per day and then up you to 15 mg per day but she might just start you at 15 mg per day
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I started seeing Dr. Bordone on 4/15, she started me off on 16 mg. I take a 11mg tablet in the morning and a 5mg at night. I heard the ones from Beacon are a little underdosed tho, so in reality I'm probably taking 14-15mg.
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Thanks Nicole, i just make appt with Bordone. What mg do you order from Beacon, 10 or 15?
Sheila
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The problem with beacon email not answering and some ignore., i don’t now why?!
Maybe they afraid . Many times i sent emails but nothing No respond form them !
Anyone else like my problem . Please give me your experience with that ,
Best regards
sultan
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Sultan I don’t know why some people are hearing back from Beacon and some are not. My only thought is maybe that they are getting back to their existing patients faster and maybe not having enough product or staff for new patients that’s only a guess I’m not really sure
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Hi Nicole,
I have been following your posts and want to thankyou for putting me on to Beacon, I have ordered 4 boxes of Tofafinix 5mg tablets. I have been suffering alopecia universals for 8 years and have not been able to get past the vellus hair stage, have tried everything!! Very frustrating, I sent enquiry to Beacons online enquiry form and eventually got response, they take about a week to get back to respond & send invoice for order. Can you please let me know how long you have suffered with alopecia and how quickly Tofacinix took to work for you, thankyou in advance. Paul
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