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 lu391 on August 5, 2019 at 10:56am

I always use Transferwise to pay Beacon, I never had any problems

Permalink Reply by Ryan on August 5, 2019 at 11:18am

Thanks! I was worried because there was a note saying something about only paying HKD in HK. Glad it works out for you

Permalink Reply by Devices561 on August 5, 2019 at 11:29am

Hey Nicole,

are you still on track with titrating off the medication. If I’m reading your post correctly you should be down to one pill by now. Would love to here how things are going as I’m hoping to start doing the same in about 2 months. 

TS

Permalink Reply by Nat on August 5, 2019 at 12:03pm

Hi TC,

Please read some prior posts. Nicole had some spots and shedding 2.5 months after reducing the dose to 10 mg.  She increased her dose to 20mg.

Permalink Reply by Devices561 on August 5, 2019 at 12:07pm

Thank you for the quick response. Will definitely read through them now. 

Permalink Reply by NicoleT on August 5, 2019 at 7:17pm

Hey TS 

Yeah my tapering was NOT GOOD. Please take my advice. 

After  One year and full re-grout with a daily dosage of 15 mg my doctor had me go down to 10 mg a day this was a huge mistake

I now have large patches all over my head and have since had to go back up not only to 15 but now to 20.

If I could go back in time I would have gotten a second opinion because now I’m hearing from Yale etc. and my new doctor that I should’ve stayed at 15 and that I tapered much too soon and much to aggressively if anything, anyone considering tapering  should start taking away like one pill a week not one pill a day. 

Now I am on a tapering dose of prednisone to try to stop the shedding. 

Here are pics for you guys...

Permalink Reply by Brock on August 5, 2019 at 7:35pm

So sorry to hear about that Nicole.  I’m not on here much but your were an inspiration to me in my toughest times.  Your pictures gave me hope (like many others) and I am forever in debt to you.  You have helped me so much and I’m forever grateful I found this site and this group.  The good news is you were a responder the first time so it’s just a matter of time before you will be back at full regrowth.  I know that this disease can be upsetting... because hair just takes so darn long to grow!!!  Stay positive my friend.  

Permalink Reply by momx2x2 on August 5, 2019 at 9:10pm

Nicole,

I'm so sorry you are not seeing regrowth instead of patches! You really are the one person that saved me! I now am 2 months on 15mg iand am slowly seeing the white hair turn dark. Without you I’d still be wondering  what I should do!!

was it Bordone  that had you go down too quickly??im sorry that you have to pave the way for the rest of us but know we are all cheering for you!

best wishes for regrowth soon!!

sheila 

Permalink Reply by Devices561 on August 5, 2019 at 9:58pm

Hey Nicole,

so so sorry to hear that. The good thing is you know that the medication works for you so this is just a slight set back. Look forward to hearing about your recovery!

TS

Permalink Reply by singh on August 6, 2019 at 3:07am

Hey Nicole keep your chin up and just think xeljanz does work for you ! So it will stable and start kicking in again! I have read somewhere that even for people who it doesn’t work should stop and restart like 2 weeks later and for some reason it then has kicked in. So just have faith and have your co-therapy and am sure the spots will start filling in.

Ive heard pulsing with bethametasone is a good combo with xeljanz l.

kind regards 

Permalink Reply by Return_life on August 19, 2019 at 4:33pm

Anyone who recommends tapering down is clueless.

Even with same dosage the disease can hit back so imagine tapering down. 

Data of biologics medication show that we become tolerant to the drug, so even if you like the tapering strategy it should be up! Not down.

Explain to your doctor the difference between a lifetime therapy and a cure.

Permalink Reply by magmck on August 19, 2019 at 5:48pm

Hi Nicole

hope yore doing ok and stabilising and seeing signs of recovery.  Return_life - have you read research that suggests Jaks have  to be increased to remain effective? . That’s a bit worrying given the higher risk of side effects with the increased dose ? ,../

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