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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 yp on
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Does Beacon still enforce the minimum order of 20 boxes even for the 11XR?
In your experience, is the 11XR any more effective than taking 2x5mg?
just some back story as to where i started and where i am now ... :)
I started end of Jan 2019 on 10 mg with no eyebrows/eyelashes then increased to 20mg in the spring/summer of 2019. my eyebrows and eyelashes grew back but much thinner than before i lost them. still very thankful that the tofacinitib worked for me and gave me back some of what i lost.
I decreased to 10 mg in late 2019 because i felt 20mg kind of plateaued for me in terms of growth. I also didn't want to stay at the higher dose for an extended period of time for no reason or benefit.
I was still taking 10mg until recently when i decided to cut down to 5mg to preserve my stock of tablets. with the growing pandemic and global shutdowns i don't want to run out and unable to order from Beacon. If i stay on one tablet of 5mg i have enough stock to last me a year...
I'm a little worried about decreasing to 5mg and losing hair again... any thoughts?
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Permalink Reply by NicoleT on
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When did you go down to 10 from 20? please let me know
I would immediately go back up to 10 instead of 5. before your head will be full of patches learn from my mistakes.
Re beacon, i bet they will let you order 10 boxes of the 11. i dont know. theres really no difference, it just depends on your dosing...for you, 5mg might make more sense bc you need to take it 2 x per day.
i take 16 mg per day so an 11 at night makes sense for me.
Where do you live? i can find out who your sales rep is. You should order asap before they start shitting down for CV19
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I went down from 20 to 15 to 10 gradually in fall/winter of 2019. I haven't had any new patches or loss since. I've also had AA for about 30 years and i didn't drastically lose my hair in a short period of time. When i lost my eyebrows about 2-3 years ago was when i started looking for new treatments and came upon this forum and tofacitinib.
I am in Toronto, Canada and ordered from Shamiul three times in total. First shipment was denied into Canada. Last two shipments were sent to the USA and had to bring it across the border myself.
I was dreading making another $500+ order but if i should be gathering stock now it's probably a good idea.
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They have a new USA sales rep. I will email you the contact.
Shamiul no longer takes care of USA.
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Nicole
woukd you mind sending me contact, I have emailed a few times but no response. I have full regrowth but afraid of running out if I can’t get an order in
thank you, you look great in pictures
next time I see Bordone in nyc I’d love to meet!
Sheila
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Hi all
here is the new USA contact:
mouree@beaconmedicare.com.bd
good luck let me know how you go hearing back.
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And Sheila I would love to meet you any time once we come out of CV scare.
if anyone here finds themselves desperate let me know I have a large supply.
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Hey guys,
Anyone having trouble placing orders from Beacon recently?
I've sent a transfer over to them earlier this week with transferwise and it was confirmed the next day. I forwarded that receipt to Beacon twice but had no response. I know it takes a while for all the transfer process but usually I'd get a reply when I send them anything...
Hope everyone is doing well during these times!
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Hey Ryan
try checking in with Mauree.
I think they are scrambling to keep up but I do think you will eventually get a tracking number from them.
mouree@beaconmedicare.com.bdim going to check with an acquaintance about another tofa manufacturer in Bangladesh and will report back to all of you once I have news.
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