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 LJBMD on March 9, 2019 at 11:31am

Thank you so much for the update and for taking the time to post your progress. We want to start our 16 yo on xeljanz, but the cost is prohibitive. We are trying to get it from Beacon. Do you still feel that ordering from them is safe? Are you having any issues with shipping? Which company do you use? Thank you!

Permalink Reply by NicoleT on March 9, 2019 at 2:12pm

My pleasure!

Beacon is great and quality is excellent. Some people have been recently reporting having a bit of a lag in communications response time with them. I suspect they are very busy due to have such a nice generic and USA not offering it yet.

Are you in the states? If so EMS is the shipper to use with no customs clearance issues.

Permalink Reply by LJBMD on March 9, 2019 at 4:20pm

Yes. In fact we just saw a doctor in New York on Thursday. She was the first to offer us some hope. Now, we need to get xeljanz ASAP! 

Permalink Reply by NicoleT on March 9, 2019 at 7:27pm

Ok amazing. Did they give you the copay coupon? 

Its 3 months free. 

Message me for any questions!!

Permalink Reply by kevin on March 9, 2019 at 9:36pm

hello nicole I would be you I did not stop rest 10mg as long as your health is good with the drug you all recover I do not want your hair falls again.
I think I have the solution for the hair to stay as soon as I have 100% of my hair I stop xeljanz, and I redo a course of interleukin 2 it seems that it puts the immune system back in order. I have already done in clinical trials hundreds of hair never fell in 1 years that I finished the cure but I had little results but the hair never fell.It will take at least 2 years for I test my theory. I'll let you know

Permalink Reply by NicoleT on March 10, 2019 at 7:37am

Thank you Kevin. I may message you. Keep me posted. 

Permalink Reply by chris_s on March 11, 2019 at 11:07am

kevin did you ever find out if you were on the placebo dose of interleukin 2 or on the actual drug? 

kevin avez-vous déjà découvert si vous preniez la dose placebo d'interleukine 2 ou le médicament en question?

Permalink Reply by Football fan on March 10, 2019 at 2:10pm

Tried the co pay card last November at CVS in Los Angeles they faxed it to their specialty pharmacy and after 1 month of at least 10 phones calls gave up they refused to give it to me and said they never heard of it before.Even though I used the card at CVS about 3years ago with no problem.

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

My doc works with a funny little pharmacy they have partnered with to use the copay coupon.

maybe ask your doc?

and this year its free. last year it was like $300

Permalink Reply by Devices561 on July 8, 2019 at 9:30pm

Hi Nicole! 

Can you tell me about the coupon program? Is it approved for alopecia Areata diagnosis? Does doctor have to call the company or can the patient initiate it once receiving the Rx from physician? Thank you so much for your contributions and congratulations on your beautiful hair

TS

Permalink Reply by Karaholly on March 26, 2019 at 2:08pm

Hi Nicole, I was getting xeljanz in the US through xelsourse, but now that i am married i won't qualify for the free medication, but we can't afford it! I have a few months saved up for after i have the baby, but I'd like to get going on some so I don't come to the point of runnign out like i have before! do you know if the coupon will work for people in the US? and if so, how do i go about shipping through EMS? Sorry for all the questions, thanks for your time!!! you responded just as well as i did with the xeljanz! Your hair looks great! I had no problems with it, and i finally had my hair back when it was time for me to stop it,and it felt amazing.. hopeful that it can just get freaken approved for us already!! =)

Permalink Reply by hopeful on May 21, 2019 at 8:30pm

hi.  did you stop xeljanz while pregnant?

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