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 November 16, 2020 at 10:48am

shoot. ok i will get mine done right away.

im also on 10/16 every other day.

Permalink Reply by Smitty on November 16, 2020 at 11:14am

Hi Nat,

Do you take fish oil pills each day?  I take 2 Nordic Naturals (690 mg.) pills each day and it keeps my HDL at a great level. Be well. :)

Permalink Reply by NicoleT on November 16, 2020 at 4:18pm

Oh good to know Smitty. Im going to order these today.

I just ordered labs from bordone.

I looked at my history, i dont have the HDL/LDL breakdown, but for my totals:

I started the meds March 2018. need to find out what my baseline was....

Feb 2019 I was 175

Oct 2020 I was 199

not terrible. not great.

fingers crosses for my numbers this week

Permalink Reply by Nat on November 16, 2020 at 4:43pm

Hi Smitty,

I take fish oil and some other supplements. Good luck

Permalink Reply by Vicki on November 17, 2020 at 5:06pm

I have had to stop due to high cholesterol- it went to 7.6 (should be below 5). Now it’s at 6.3 so lowering. I just couldn’t risk a stroke/heart attack as my mother had a stroke. I was on only it for just shy of 12 months. So upset I had to stop also because how much it has cost, and I think it takes longer than this to really see great results. I was only on 10mg, which is what is allowed in U.K.

Permalink Reply by Joja101 on November 13, 2020 at 10:48am

Just wanted to check in if anyone has been able to get in touch with Mouree. It's been two weeks and I've emailed from two separate emails

Permalink Reply by Smitty on November 16, 2020 at 11:11am

Hi Joja,

I reached out to Mouree two weeks ago wanting to place another order as my last order took over 3 months to receive.  This time, I want to be pre-emptive and allow "waiting time" if it the order is delayed.  I have not heard back, which is unusual as she normally responds back in a day.  Perhaps it is due to a holiday there in Bangladesh or perhaps a Covid issue?  I will let the forum know when I do hear back.  Hugs to all of you!!!

Permalink Reply by Joja101 on November 17, 2020 at 4:21pm

Really appreciate that Smitty!

Permalink Reply by Smitty on November 18, 2020 at 6:57pm

Hi Joja101,

I just received an email from Mouree stating that they had trouble with their server.  She is accepting orders for Tofacinix now.  You might want to reach again. Be well!!

Permalink Reply by NicoleT on November 18, 2020 at 7:21pm

oh thats great! everyone should stock up before theres another shut down!

Permalink Reply by Ben on November 19, 2020 at 3:05pm

Hi All,

I hope Nicole won't mind me asking for advice on her discussion page, but I'm at a loss what to do and not very good at these forum's.

My son is AU and he was treated for 4 years by a dermatologist who had him on cyclosporin, it worked well, but a year ago his dosages was reduced at intervals to zero and his hair started to fall out.

So we got a doctor to monitor his bloods and started him on one tobacitinib generic from Beacon 5mg a day for a month then two 5mg a day for 2 months  and finally three for the last 4 months. All this time his hair has continued to fall out. The doctor supervising him has now agreed to increase is dosage to four 5mg a day for a month.

So, my question is from peoples personal experience is it too soon for my son to stop tofacitinib and maybe try Baricitnib. All advise welcome

Thanks

Ben

So, is it to soon t

Permalink Reply by NicoleT on November 19, 2020 at 4:07pm

Hey Ben,

I friend of mine here in NYC has been AU for many years (maybe 3-4 years)

When she decided to try tofa, her doc here in NYC started her immediately on 20mg per day. Its working.

My advice would be to give it 3-4 months on 20mg per day. It think this is the dosage it takes to really reverse AU. 

If no luck after another few months at 20 i would try Baricitnib..

good luck and i will look forward to hearing advise of the others

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