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 12, 2019 at 8:49pm

Thank you Steve!!

Looking forward to seeing your next update and those amazing eyebrows you've got!! ;)

Permalink Reply by Sad_Rapunzel on March 15, 2019 at 10:56am

This is unbelievable!!!

Could you please give me contacts of your doctor? 

I will travel anywhere just to be treated by such a specialist! Because everybody I've met prescribed me only Minoxidil and I can't do it... 

Thsi is very amazing results.... 

Maybe you are just that 1% of all people who are lucky...

And I'm that 1% who will go entirely bald in few yeras... after being hair model... 

How did you overcome social appearance when you was without hair? Could you please shar

Permalink Reply by NicoleT on March 15, 2019 at 11:00am
Hi Rapunzel!
I see Dr. Filamer Kabigting at Columbia University doctors Dermatology

at 51 W 51st St, New York, NY 10019

(212) 326-8465

Love him!

When i was without hair i wore lots of hats and wigs for about 2 years :( 

Was not fun.

Feel very blessed to have found this med to get my hair back.

Was terrifying.

Keep me posted how you go!

Permalink Reply by Sad_Rapunzel on March 15, 2019 at 11:10am

OMG! I can't believe it... I just left New York with really only one thought - I don't have any sense to fight anymore. I am really want to end it all. 

I've seen two dermatologists in New York, Catherine Ding and Dr.Bruder, who supposed to be amazing, but even he prescribe rogaine and also still want me to do biopsy, which I could not understand the reason for. I made photos of my hairlines and I still have same bald spots on my scalp. So if I shave even a small piece for biopsy it will stay bald forever... 

Thank you for you reference! I will try to contact this doctor... Maybe God finally decides to stop torturing me and sent your story in my life. 

Thank you again 

p.s. sorry for poor english ;(

Permalink Reply by NicoleT on March 15, 2019 at 11:15am

I saw Dr Bruder.

I did not care for his manner, his communication and his treatments never worked for me. Him a long line of other horrible derms.

Go to Columbia University and get on xeljanz.

Stay positive, you are beautiful and this will pass and over time, you do become empowered and love yourself and accept it. It comes with time!

xoxoxoxo

Permalink Reply by Ahmed on March 30, 2019 at 10:59am

Hey Nicole!

I live in NJ and am considering going to see Dr. Filamer Kabigting. However, I live about 2 hours away so I would need to take off from work to go there. I wanted to know how often you had to visit him after your initial visit. Did you have to go in once a month or can you call/video call him to go over progress?

Permalink Reply by Nat on March 30, 2019 at 5:27pm

Hi, I live in NJ 3 hours away. I saw Dr.Kambigtin. After the initial visit, he wanted me to come every 3 month.

Permalink Reply by Ahmed on April 1, 2019 at 8:25am

Hey Nat. How did you get there from NJ? Did you drive or take the train? Is there any parking near his office?

Permalink Reply by Nat on April 1, 2019 at 10:04am

Hey, I took a bus. Then 15 minutes walk from Port Authority.

Permalink Reply by TC on March 12, 2019 at 6:43pm

We really need a group hug button :)

Permalink Reply by NicoleT on March 12, 2019 at 8:50pm

Yes we do!

Sending all of you huge hugs through all the trials.

Permalink Reply by NicoleT on March 13, 2019 at 9:07am

Yes South Carolina is a quick trip to NYC :) 

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