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

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Replies to This Discussion

Permalink Reply by NicoleT on March 27, 2019 at 11:48am

Hi There!

Its interesting some ppl are saying they aren't getting responses from beacon and other are.

Who did you write to, where do you live and how many did you try to order?

Permalink Reply by Bmitch5150 on March 27, 2019 at 3:02pm

I wrote to both the webpage and to Shamiul

USA and 9 boxes

Permalink Reply by NicoleT on March 27, 2019 at 3:29pm

So i do think Shamiul is the correct contact for USA.

Im wondering if they are only getting back to ppl ordering 20+ boxes.

I feel like I remember someone mentioning this in a previous post...

Permalink Reply by Brock on March 27, 2019 at 3:32pm

I think there are just a lot more people ordering so it is taking a little more time because they only have a few people working.  Not sure how long you waited but I would be patient.  

Permalink Reply by kevin on March 27, 2019 at 4:18pm

hello for 2 months I have blood when I fly and abdominal pain odds it's been at least 4 months that I do not work blood I know it's not good but I'm so afraid of having to stop xeljanz. I'll see my doctors next week. I wanted to know if any of you had any side effects. I also that I arrived at the best that can do xeljanz for me at the level of the shoot I think passed to baricitinib if my health is good beacon have baricitinib but before I would have tested it costs very expensive 560 euro. I have already tested tofacinix

Permalink Reply by Bmitch5150 on March 27, 2019 at 4:44pm

yeah, I'm just worried about it because I don't know who to trust to buy it from for as good of a price like that and my one bottle is about 12 days from being gone. And I'm hoping being off itll whenever I figure it out won't set progress back to much

and kevin always get blood work my man.

Permalink Reply by NicoleT on April 2, 2019 at 10:52am

I would talk to your doc about the best way to come off of enbrel and onto Xeljanz.

Sounds like xeljanz can work on both conditions for you so its a 2 for one and one less med to be on.

You should be able to have insurance cover xeljanz since you have RA!

Permalink Reply by yp on March 28, 2019 at 10:28am

How often do you guys on tofacitinib get your bloodwork checked by the doctor? 

Permalink Reply by NicoleT on March 28, 2019 at 10:32am

Columbia University only checks my labs annually.

I have had no problems.

Permalink Reply by Sad_Rapunzel on April 1, 2019 at 5:32am

DEAR NICOLE 

PLEASE SEND ME AN EMAIL OF DR.KING IN PRV MESSAGES, because while I'm out of US now< I still want to have a consultation with him and book an appointment, so I will not wait another month when I come back to NY.

Thank you a lot in advance!

Permalink Reply by NicoleT on March 31, 2019 at 8:35am

Hey Ahmed,

im sure dr Fil would be open to email/photo progress updates after your initial appointment and maybe to see you every 6 months instead of 3 due to the distance. 

 He saw me the first time after three months and then he changed it to every six months 

Permalink Reply by NicoleT on March 31, 2019 at 8:43am

Hey guys

Updating you all on my weaning process. 

I am now now one month into the reduced dosage.  I dropped down from 3 pills (15mg ) per day down to 2 pills (10mg) per day on March 1. 

So far so good, no patches no shedding! All is stable hair is very full. 

Will update you on May 1. Fingers crossed! 

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