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 bibby on September 11, 2019 at 5:14am

Hi. Sorry for the late reply. Before I embarked on the xeljanz pills I had about 30% of my scalp hair which was mainly cob web like quality overall encompassing this 30%. My right eyebrow 100% hair free and the left brow had about 20% coverage and just about to completely disappear too. Zero hair on my face apart from moustache area. Presently my sides of my scalp and the front 4 inches are proving to be resistant with same cobweb quality hair so I will increase to 2 and a half beacon pills daily bringing me to 10.5mg per day (which is roughly the standard recommended dose) to see if this crosses me over the line to 100% full terminal quality hair regrowth. Fingers crossed. 

Permalink Reply by Cocopuffz17 on September 11, 2019 at 4:36pm

I hope it does! That it awesome regrowth! 

Permalink Reply by alopeciaguy1990 on September 6, 2019 at 10:46am

Hey! i have a couple question i’m a guy with alopecia i just sent you a friend request! Thanks

Permalink Reply by NicoleT on September 2, 2019 at 9:12am

Hey Nat

So sorry I keep meaning to respond to this.

I do not want to stay on 20mg. I want to get back down to 15mg as that was a dose that I was stable on.

I will see Brodone this month and Im hoping in Nov/Dec I can start a SLOW taper back down to 15mg.

Will keep you posted

x

Permalink Reply by Nat on September 2, 2019 at 9:53am

Hi Nicole,

I hope you will succeed! I need to see Bordone but a trip to NYC takes all day. I am staying on 15mg and not planning to reduce based on your experience. 

Thank you for your guidance and support!

Permalink Reply by Ben on August 26, 2019 at 1:50pm

Brilliant Nicole, thanks for keeping us up to date 

Permalink Reply by Lauren on September 1, 2019 at 11:17am

I’m so glad that it is coming back fast! Interesting that it is still pigmented.

Permalink Reply by Ryan on September 6, 2019 at 8:45pm

Hi everyone,

I've been taking tofacitinib since April and had great progress on my scalp (and very slow progress on my eyebrows) and I've made another order over a month ago. It seems it's stuck in Customs for the past week and I can't get an update on what's going on with it.

If anyone has an extra box or two if be willing to pay double plus shipping just to not lose my progress. I've been off the medicine for a few days now, and before that I cut my dosage to 1 pill per day. 

Or if anyone has advice on how to check the status of customs, I've called USPS but they couldn't help.

Thanks!

Permalink Reply by momx2x2 on September 7, 2019 at 11:20pm

Where are you located?

sheila

Permalink Reply by Ryan on September 8, 2019 at 2:43pm

I live around the Boston area

Permalink Reply by momx2x2 on September 8, 2019 at 10:51pm

Me too, I work in town and can lend you a box till you get yours 

I’ll bring with me tomorrow 

I think there’s a way we can talk direct, just not sure how ?

sheila 

Permalink Reply by Apple on January 11, 2020 at 5:13pm

YOU LOOK AMAZING SO HAPPY FOR YOU. IWILL HAVETOLOOKINTO BUYING IN BANGLADESH I THINK I WAS JUST TAKEN FOR MONEY SPENT IN INDIA.I HAVE BEEN ON XELJANZ SINCE 2014, WITH NO SIDE EFFECTS, BUT INSURANCE CO SAY MED NOT COVERED. IN 45 DAYS OFF MED ALL SX RETURNED. MY UCSF DR SAID ITS NOT A CURE, ITS A TX..THE MED STOPS THE ATTACK ON HAIR FOLLICLE BUT UNDERLING PROBLEM STILL EXISTS. BEST WISHES LOVE.. STAY ON THE MEDICATION AS LONG AS YOU CAN AFFORD IT.

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