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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 live in EST time zone. Sent email to Beacon Pharma yesterday afternoon. They replied with required information last night. I replied back after 11 last night with the amount and dosage I wanted. I received invoice later same evening and I wired the funds today. I’m not sure why I got such a quick response and others haven’t but I was very formal in my emails. Thanks again Nicole and everyone here for the guidance. Feeling just a little bit excited but afraid to get my hopes too high!
Sheila
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Hey Sheila, out of curiosity, how many boxes did you order? I placed my order last month and ordered around 15 which I easily got. Wondering if those who are not hearing back are ordering low quantity.
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Hi Kevin
did you get the lab results on beacons generic baricitinib yet with regards to how close it is to the original ?
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Permalink Reply by Mike Staffieri RHN on
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so cool to see...hopefully you don't relapse...praying you don't
I'm in Canada and because it's public health, finding a doctor to do this is nil and next to none...I can;t even get a prescription for it...any other Canadians going this route...please let me know what your efforts have resulted in
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Permalink Reply by Vanessa on
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Hi Mike,
I'm in Canada. I live near the border in a rural area. I ordered Beacon's product to a mailing/receiving location in the US (20 boxes, I thought that was their minimum order, they were very fast getting back to me and shipping timeline was as estimated). I understood that orders direct into Canada were being seized. I brought it back into Canada myself - sneakily (my decision to take risk, I'm not suggesting anyone do the same). I let my GP know that I planned to start taking the medication and he ran basic labs and I had a TB test. He has referred me to a dermatologist but no word yet (this doctor is hours from my rural home, and has a months-long waitlist). Ideally this doctor will monitor me, even if she wasn't the person to prescribe. Kind of a harm reduction approach? In any case, on April 26th I went ahead and began to take 2 tabs/day. Recently I decided to increase to 3/day because I understand the Beacon generic may not be full strength. I have not noticed any hair yet, nor any side effects. Good luck!
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This is exactly what I did. I shipped it to a location near the USA border and drove it back myself. It's a risk I was willing to take. Health Canada will seize it if you ship it directly into Canada. I lost my first order this way and got a letter from customs.
I've been on 10 mg since February, definitely seeing an improvement overall on my scalp and facial hair. Went from no eyebrows to about 50 percent coverage. I was thinking of increasing my dose to 3 pills a day but I may stick to 2 for now. I started with AA not AU like a lot of people here with most my scalp hair already there from before. Eyebrows and eyelashes were my main concern and the medication is working. Appreciate all the support from everyone here.
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Hi YP hope everything will be good with you
my question Are you on Tofacinix (tofacitinib)that made from Beacon?
Thanks a lot
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Hi yp
Great you are seeing results from just 10mg of Beacon generic and have 50% eyebrows in less than four months! How long before you started to see growth? I have one tiny patch of eyebrow (5%?) and would so love to have them all back :)
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Hi Nicole.
It seems that there is a GP in Ireland who is willing to prescribe Tofacitinib for Alopecia. I don’t think I will qualify for the drug payment scheme which operates for Irish citizens as, living in Scotland I am a Uk resident. I may consider ordering from Beacon and trying to register with Dr Ryan in the hope that she can take and monitor bloods and advise on dosage as this may be my cheapest option. Given the issues around with supply/ customs etc my worry is that there is a gap and I’m without the medication. Can you advise of what quantities of medication you order and whether the medication goes out of date
thanks for your help !
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Hi Nicole Sorry to hear about your shed.I think we know more about Alopecia than most Doctors!I thought you were weening yourself off to soon.When I go up or down dosages I always either add an extra pill every other day or take one away every other day for a few weeks that way it’s not such a shock to your system.You had such a good response I know you will get everything you lost back soon.Thank you for sharing your journey with us you have no idea how many people you have helped.
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