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 Ryan on May 15, 2020 at 1:07pm

Thank you Nicole! I've sent you a message :)

Permalink Reply by NicoleT on May 19, 2020 at 10:27am

Hey Ryan and Smitty 

Happy to send you guys some boxes today. I just emailed both of you. If anyone else here is in the United States and is desperate and out of pills please let me know I can send you some to tide you over. 

Permalink Reply by NicoleT on May 19, 2020 at 10:51am

Yes tori message me!! Xo

Permalink Reply by Football fan on May 20, 2020 at 5:14pm

Nicole you are way to generous.

Permalink Reply by PaulV on October 11, 2020 at 8:15pm

Hey Nicole, wanted to thank you for all the information and posts you've made - they've been such a huge help.  I'm AU and on my fifth month of JAK treatment.  While my results have been really good, my regrowth feels soooo slow.  This really is a marathon, not a sprint.  One of the most helpful posts you made was a set of 6 tiled pictures showing your growth progress over a 9 month period.  It's like a roadmap - I refer to it all the time (my progress is closely matching yours).  It honestly keeps me sane, as it reminds me that although things are moving slowly, I'm making good progress!  Hope you're well, and thanks again.

Permalink Reply by NicoleT on October 14, 2020 at 12:53am

IM so happy to hear that!!!

Yes it is sloooooooow but it will happen!

Here is my current hair:

Permalink Reply by Vicki on October 14, 2020 at 2:59am

Hi Nicole

Thank you for showing this photo.  I have been on Tofacinitab for 12 months and even though my patches filled in, they filled in very thinly.  It also raised my cholesterol level, I am now thinking of stopping but maybe I am giving up too quickly.  Are you still on it?

Permalink Reply by NicoleT on October 14, 2020 at 10:00am

Hi Vicki 

Yes 12 months is still early your patches will fill in and be as thick as your normal hair eventually. 

yes I am still on I have been on now for two years and eight months. 

it has raised my cholesterol as well so I have made dietary adjustments to offset that basically cut out red meat and dairy and no packaged hydrogenated foods and that’s keeping things at a good level

Permalink Reply by Vicki on October 14, 2020 at 5:51pm

Hi Nicole, my hair is really so much thinner than yours at all your stages - i have to keep shaving as to thin to grow. That’s why I am wondering if I should continue. My derm suggested adding oral minoxidil but I don’t want to do that. Also I am only on 2 tabs a day. So confused what to do as it’s so expensive in the U.K.

Permalink Reply by NicoleT on October 23, 2020 at 2:50pm

tough one...

i dont like minoxidil .

i only had very thin regrowth on the 10mg per day and 15mg per day is what brought the thick regrowth

but i know the money is an issue. so frustrating

Permalink Reply by hgpb on November 9, 2020 at 9:45am

Hi Vicki

Do you get your tofa from beacon or a derm in UK? I have been on beacon tofa since middle of June and have almost full regrowth. I have tapered down to 7.5mg from 10mg, seemingly ok so far. 

Permalink Reply by momx2x2 on October 23, 2020 at 12:27am

I’ve been on Xeljanz for 16 month, full regrowth. I got a few spots when I started to reduce Dosage and immediately went back up and Spots grew back. but all of a sudden I have two small spots and I’m not sure what to do. my head is itchy which used to be a sign of it falling out . I currently take 5 mg and 11 extended release from beacon. any thoughts anybody?? Should I increase to 20mg? 

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