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 Arsenalauba on June 14, 2019 at 6:15pm

Hi!

For like 3 years ago I lost all my hair. We (my family) worked hard to get me up to the world again from depression. We found a medicine called Jakavi. Jakavi was absolutely brilliant and all my hair went back. I’ve never been so lucky and happy in my life. But 6 months ago I couldn’t take Jakavi anymore because it was to expensive. So I went on with a new medicine called Olumiant and after like 3 weeks I started to lose hair. The same thing happened to you when you tried to get down in the mg with Xeljanz (Tofacitinib)!? However I’ve now started with Xeljanz and I have taken the medicine for a month now. I have no regrowth yet (on those spots where I’ve lost the hair. It’s on the scalp.). I’m taking 5mg twice a day and hopefully I will get back my hair. What do you think? Any tips?

Permalink Reply by Arsenalauba on June 14, 2019 at 6:58pm

Jakavi was on 20mg twice a day.

Permalink Reply by Bmitch5150 on June 14, 2019 at 8:12pm

I personally didn’t see much gain, with 10mg a day and once I got my order from beacon. I upped it to 2 in the morning 2 at night so 20mg a day.  And my eyebrows are almost back and I only have two patches left that are filling in. 

Permalink Reply by Arsenalauba on June 16, 2019 at 6:41am

Is it dangerous consequences with such a high dose?

Permalink Reply by kevin on June 16, 2019 at 11:35am

hello i'm on xeljanz since 1 year i wanted to start olumiant because i do not have a complete regrowth with xeljanz.
it is strange that your hair has started to fall because jakavi and olumiant are from the same family inhibitor jak 1 and 2
xeljanz is an inhibitor jak 1 and 3.
when you quit jakavi did you have a stop without medication? because if you quit without any medicine it could be the cause
how long have you been taking olumiant?
so for 20 mg of xeljanz several users here take it for years me myself too,
you can use a few months and go down as much as 15mg and 10 mg.
even at 10 mg there are side effects you have to be followed by a doctor.

Permalink Reply by Arsenalauba on June 16, 2019 at 12:38pm

I didn’t stop the medication. I took jakavi and the next day I began with olumiant. I took Olumiant for 2 months but I started to get patches and lose hair after like 2 weeks or something. Therefore I tried Xeljanz 5mg twice a day. When I took jakavi 20mg twice a day, everything was perfect. I might lose hair because I take a lower dose now or what does you think?

Permalink Reply by Arsenalauba on June 19, 2019 at 7:43pm

What medicine are u taking now?

Permalink Reply by Bmitch5150 on June 16, 2019 at 11:54am

I haven’t had any side effects luckily but I also go for blood work soon,

with anything that’s not natural to the body and can be as bad as xeljanz go to the doctor.   

You may want to do 10mg for a month. And then 15 ect. 

For me to see the regrowth ive had so far. It’s taken from mid April to mid june

Permalink Reply by Arsenalauba on June 16, 2019 at 12:39pm

I have been taken Xeljanz for 1 month and 1 day now. 5mg twice a day and no regrowth, hopefully it will work soon.

Permalink Reply by kevin on June 16, 2019 at 4:20pm

quelle dose avez-vous pris olumiant?

Permalink Reply by kevin on June 16, 2019 at 4:21pm

you took 20 mg or 40 mg daily of jakavi?

Permalink Reply by Arsenalauba on June 16, 2019 at 5:14pm

40mg jakavi everyday.

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