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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 Ben on
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Hi Nicole,
My niece is a consultant for disease and infection control, in a Dublin hospital, Ireland and she's telling me tofacttanib is considered experinental and only used around the 8th day for server covid infection, it might cut down a patient's abnormal immune reaction, but on the other hand it might allow the virus run rampant through the body. some consultants will not use it at all.
If your taking a jak inhibitor you are not more at risk of getting covid 19, but you are more at risk of getting a server covid infection. Anyway that's the advice im getting in ireland.
I'd love if Tofacinix helped and you may be ahead of research in the US, but please be careful until its proved.
Take care
Ben
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Permalink Reply by NicoleT on
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I just think it’s super interesting that it’s being used in that capacity.
people are certainly just getting started with it data wise.
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Finally after years of trying tofacinix and getting a good response on 4 pills a day.Not enough to stop wearing a wig yet but seeing new hairs everyday and don’t cringe every time I look in the mirror.Was never able to take that many pills till Nicole found Beacon for us and now this crazy virus takes over the world and we can’t place any orders.Pzifer now has made it very hard to get on the hardship program.It use to take just a no from your insurance and proof of income plus the paperwork you and your doctor fill out.Now There has to be at least 2 appeals to your insurance and my doctor is not willing to do that and I can’t even go into her office and beg.My husband has bad asthma and we live in Los Angeles so we are on full quarantine.Hopefully things will calm down next month.Good luck to everyone and stay healthy!
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It’s such a mess I know. I’ve just switched insurance yet again hoping to make appeals and get coverage but I won’t get my hopes up.
phizer has also gotten rid of the annual coupon of course.
beacon got back to me as well they say they will reopen on April 25. EMS is closed but reopening soon.
vanks are open they are allowing money to come in now and then they will ship once the office opens.football fan let me know if you are in a pinch and need meds to tide you over. I can send. Glad to hear the growth is coming praying you can be out of that wig by the years end.
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You are so sweet thank you if I can order by next month I should be ok.iI think when I place my next order I will order the 11 mg instead of the 5mg
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Yeah it’s a little better value and obviously you can get more in in a small box
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Hi all,
Firstly, I'm new to Alopecia Areata as of November and I had the good luck to see it progress during a pandemic, oy. I've been exploring options for treatment and have found so much hope on this forum, so thank you for that. It means the world.
My question is this, I'm in the Los Angeles area, has anyone had any luck with shipping Tofacitinib from Beacon to SoCal? Obviously, before the pandemic it was easier but I'm just curious if customs has been an issue or if EMS to USPS has been reliable. Again, thank you so much for any insight.
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Hey Mike you will be fine with shipping from Beacon via EMS and USPS to California.
They say they will be up and running by next Monday.
let us know if you need any guidance.Are you just patchy hair loss at this point?
was there a catalyst/trigger for the onset?
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I live in Los Angeles and ordered from Beacon 2 times and had no problems.
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