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 Football fan on January 23, 2020 at 12:52am

All the info is on the statement beacon emails you.I just print it and take it to the bank I use Chase they know what to do.i believe you need the account number for the bank in Hong Kong and the address otherwise where would the money go.Check with beacon in a few days and see if they received it.

Permalink Reply by Vicki on January 22, 2020 at 10:48am

Hi, Great photos, and I am so happy for you!!!

I am currently on 2 tablets a day (one in the morning and one in the evening).  I have been on this for just over 3 months, seeing some improvement but it is costing me an absolute fortune privately and I am not sure how much longer I can afford it.  I want to stay on this medication and my hope would be to order from Beacon.  Can anyone help me.  I did email them but have not heard back.  I am from the UK so I am lucky to have been prescribed Tofacinitab. 

Permalink Reply by ZeeZeeUniversalis on February 22, 2020 at 10:33pm

I Ordered exactly from who NicoleT said to order from.  I ordered Feb 1 meds came Feb 8th. Came so fast I had went away for 2 weeks and just picked it up when I got home today. I will take before and after photos. I live in NYC 

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Permalink Reply by ZeeZeeUniversalis on February 22, 2020 at 10:34pm

I Ordered exactly from who NicoleT said to order from.  I ordered Feb 1 meds came Feb 8th. Came so fast I had went away for 2 weeks and just picked it up when I got home today. I will take before and after photos. I live in NYC 

Permalink Reply by NicoleT on March 16, 2020 at 9:24am

Hey ZeeZee!

Im in NYC as well. Once we come out of the covid period, would be great to meet up!

Stay healthy!

Permalink Reply by Ben on March 16, 2020 at 9:52pm

Hi Nicole, 

Was just wondering if anybodys  doctors  have taken them off the jak inhibitors, as both my boys where taken off their imune suppressants due to the covid 19 or cronavirus. one is devastated we don't know what to do.

Ben

Permalink Reply by NicoleT on March 16, 2020 at 10:23pm

Hey Ben,

No, doctors here aren't taking people off of it.

I have a friend who was just prescribed it a few weeks ago.

My Dr. friend here is keeping her teen daughter on it.

She says our immune systems are hyperactive which is why we got this in the first place.

So far so good for me during covid. fingers crossed. I am in NYC isolating with my fam. eating lots of citrus. taking vitamins b6, c, d, e daily.

hard to advise what to do its all very personal. i am certainly staying on.

Permalink Reply by Ben on March 16, 2020 at 10:27pm

Thanks Nicole,

Stay safe,

Ben

Permalink Reply by Sami on March 22, 2020 at 8:49am

hi vicky im based in london, wondering how much do you pay for tofa?

Permalink Reply by Frida on May 8, 2020 at 8:52am

Hi vicki

I am living in uk as well I live in north west London 

I am finding difficult to find the doctor who prescribe xeljanz.

Yesterday I wrote to one of dermatology in bergamo Italy but no chance to go there minimum one year as it is difficult time for all this time I hope that virus goes.

any help from you I really appreciate it 

thank you 

Permalink Reply by rob on March 15, 2020 at 5:28pm

Aren't you likely to pass autoimmune diseases to your children (not just alopecia)? I have chosen not to have children personally.

Permalink Reply by Brock on March 15, 2020 at 6:06pm

Both my parents don’t have autoimmune problems and I do.  I’m sure there is some correlation genetically but I know someone who is AU who had 4 children who are all in their 40s now and have never had any Alopecia in their lives .

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