Starting Tofacitinib to replace Benepali : I have Sero... - NRAS

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Starting Tofacitinib to replace Benepali

risned profile image
7 Replies

I have Sero Positive RA for 46 years and been through all the treatments, now biologics not working, so starting a Jak Inhibitor Tofacitinib. I would like to hear from other members who are or have taken this drug

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risned
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7 Replies
Mmrr profile image
Mmrr

46 years with RA goodness....I was diagnosed a little over 4 years ago with seronegative RA. In that time I've been on 4 traditional DMARDS and 4 biologics / JAK inhibitors, I've had to stop most of them due to side effects.

I started a half dose leflunomide and toficitinib last summer and increased toficitinib to full dose in the Autumn...I've made steady progress with only minor side effects of toficitinib (sinusitis). My joints are less swollen not as painful and I'm less hot and bothered generally.

It is easy to take, no issues. I hope it works for you too 🤞

risned profile image
risned in reply toMmrr

That's encouraging to hear, it would be wonderful to be able to function a little more than I'm able to at present.

Sanbanan profile image
Sanbanan

Hi

I have been on Tofacitinib for nearly two years now after failing on numerous biologics.

It has been a godsend for me by dampening down pain & inflammation. If I have had to come off it for any reason (surgery/infection), I notice a huge increase in symptoms again.

I take it with food and also drink plenty water and i get few side effects.

Good luck with it.

Best wishes

risned profile image
risned in reply toSanbanan

Thanks for your very positive reply, I hope it works as well as it has for you

Teatrees profile image
Teatrees in reply toSanbanan

Hello, I am in year two of Tofacitinib also with good benefits and few side effects although I wonder if during the summer your sweat if you get hot smells stronger and I still get the odd rash on my feet, but the benefits outway the negatives. I hope it works well for anyone who is new to taking it.

Teatrees profile image
Teatrees

I have taken this drug for a year and it has changed me for the better. After eight years of trying everything from Methotrexate to 5 biologics, my daughter cannot believe how much better this has made my painful leg and foot! Everyone is different, yes I have had a little weight gain and a few tiny blister or whitehead spots, but the benefits outweigh the negatives. I hope this helpsGood Luck.

risned profile image
risned in reply toTeatrees

Thankyou for your encouraging reply, I have been on it for a month, not seen any immediate results, but at least I am no worse so hope to keep improving, not noticed any side effects so far. 😃🌈

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