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 March 28, 2020 at 6:57pm

Thanks Nicole! You're always a tremendous help! :)

Permalink Reply by Fred on March 29, 2020 at 6:52am

Hi everyone,

I’m new here and have spent the last few days reading these forums and it’s amazing how much info is here. 

Im from the east coast of Canada which really limits my ability to access Beacon, as I have no access to the Canadian border. Which makes it impossible to me to ship Xeljanz across the border and attempt pick up and bring back across.   I was in contact with the rep at Beacon before Christmas and they very much advised not attempting to ship direct into Canada as it will be seized. 

Has anyone figured out a solution in a similar situation? 

For example, I’m wondering if it’s possible if someone near the board picked up across and was successful getting across, could they then mail the drug domestically to other members in Canada? Or would that get seized? 

Or similar situation, someone secured it in Canada and if I were to fly domestically to pick it up, how difficult would it be to fly home with a few months quantity of the drug. 

At the price point Beacon has it would be extremely affordable to me and it’s too bad we can’t access in Canada. I would be willing to pay a premium for access to it essentially. Or pay for someone else’s that could help. 

Permalink Reply by Joja101 on April 7, 2020 at 11:10am

Anyone have new contact to place a Beacon order??? Thank you

Permalink Reply by lu391 on April 7, 2020 at 11:50am

yes, they replied. I made an order with quick order last Monday, however in bangladesh there is lockdown, maybe they don't answer for this reason

Permalink Reply by Joja101 on April 7, 2020 at 2:35pm

Thanks you, Whats the email?

Permalink Reply by lu391 on April 7, 2020 at 3:07pm

I ordered tofacinix from the beacon website, by clicking quick order, I don't use mail

Permalink Reply by NicoleT on April 7, 2020 at 3:05pm

For USA customers its

mouree@beaconmedicare.com.bd

Permalink Reply by Joja101 on April 7, 2020 at 4:18pm

Thanks you two!

Permalink Reply by momx2x2 on April 7, 2020 at 5:42pm

Nicole, 

im dropping from 15 mg to 10, I know you lost hair when you dropped down, how long before you started seeing new spots. I try and go up to 15 every third day or so but I haven’t been very good at tracking.

also, I emailed at the mouree email you gave and via website and have heard nothing, another 

reason I’m reducing to save what I have 

thanks!

thanks, Sheila  

Permalink Reply by Brock on April 7, 2020 at 5:56pm

I talked to Mouree last week.  The offices are closed until at least April 12rh... maybe longer due to the virus.

Permalink Reply by robertking on April 14, 2020 at 11:46pm

Any updates from Beacon?

Permalink Reply by NicoleT on April 18, 2020 at 1:27pm

I dropped Beacon a line today. Let you know if I hear anything back.

Want to know something fascinating...Tofacitanib is being used as a COVID19 treatment by hospitals.

So its anti-inflamation properties are helping protect us.

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