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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 Mike R on
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Thanks Nicole and Football fan, I really appreciate the assurance.
My pattern is the Ophaisis type and began on the left side above my ear, it’s since progressed to about 35% of my left side. There are some spots that have emerged above my forehead and are expanding, as well as on my beard. I don’t know the catalyst, as I’ve been healthy for 35 years, though autoimmune disease runs in my family. It’s been really hard to cope but I’m not going to give up on my life. I’m willing to take the steps and risks to try JAK inhibitors and would be doing so after consulting with my doctor and dermatologist. We are fortunate to have good insurance but I’m not counting on it for this medication, so I’d rather be proactive and try Beacon. I am a little concerned about side effects-mainly shingles, as my wife had it and it was really painful for her. -
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Permalink Reply by NicoleT on
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Hey mike
hey mike you could always have your derm put you on a preventative dose of something for shingles. Not sure if it works the same but I have herpes and when I started on tofa I went on a preventative daily dose of Valtrex to avoid getting outbreaks.
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Thanks Nicole, that's helpful to know :) I wonder if there's anyone here who's started tofacitinib and has been given the Shingrix vaccine prior to or during treatment. It seems like it's promising at as a safer alternative to the traditional live virus vaccine for shingles.
I guess my main thing right now is figuring out what sort of steps I should be taking with my doctor/derm to make sure I mitigate the risks of taking Tofacitinib.
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If you can switch to Kaiser come new year, they cover Xeljanz. With rebate it is free.
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Hi Nicole.
I have 6 boxes of beacon 5mg remaining. I’m doing the maths on what’s left. My regular dose is 2.5 pills per day. If dropping to only 2 pills per day now will give me stock till 2nd of July and need to drop to 1.5 pills afterwards bringing me to 16th august till I’m out of pills. Do you have any inclination from your beacon contacts if they will be commercially operational for Uk / US orders in 6-8 weeks ? I really don’t want to mess up my present 2.5 pills per day regime but if I was semi secure on knowledge that I could get a new order arrival before I’m out of pills I’d stay the course. Thanks in advance , David
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Hey David,
Beacon is currently accepting orders, processing invoices and accepting wire transfers.
They say they will start shipping on monday...
But not sure if that will get pushed back...
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I got the first shot of the shingles vaccine in June and the second shot in August and started xeljanz again in October.Had a friend that got shingles and it looked pretty painful and lasted for months.
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Hi everyone hope you're all doing well these days.
I'm wondering if anyone else has had any luck with updates from beacon. I've placed an order in early Feb but they are saying EMS is closed so they can't ship it out.
I usually take 15-20mg per day but cut it down to 10 for a while to have enough until my next batch. I had to cut it down to about 5mg after that and now I'm on 5mg every other day that should last me one more week and then I'm out.
If anyone has a substantial amount they'd be willing to sell to me I'd appreciate it but only if you have enough to maintain your normal dosage for a long time.Thanks!
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