New Biologic : Has anyone tried Xeljanz (tofacitinib... - NRAS

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Iluvgardening profile image
14 Replies

Has anyone tried Xeljanz (tofacitinib)? I went to see my rheumatologist on Tuesday and she wants me to give it a try. I have Psoriatic arthritis and other conditions. I was on Orencia infusions and it was helping some,but not long term. I changed insurance and it is not affordable for me now. My rheumatologist is giving me samples that she receives at no cost to me,until I can change insurance in the open enrollment period. She is a awesome rheumy. I am just not sure if I want to try another biologic, I have been on so many and they have helped some for an example on Orencia I could close my hands,of course it would wear off before the next infusion. There are so many side effects and the relief is so short term. I have asthma and mild Bronchiectasis. I have been dealing with alot of lung issues,so I am a little cautious of trying a new biologic. Just wondering if anyone has tried it and if so ,what were your thoughts and did you have any long lasting side effects? Thank you for any imput.

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Iluvgardening profile image
Iluvgardening
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14 Replies
nomoreheels profile image
nomoreheels

Xeljanz (tofacitinib) is one of a new group of meds called Janus Kinase (JAK) inhibitors, an oral med & as such continual treatment, as opposed to infusions which last x number of weeks & may wear off leading up to your next infusion. It could be you'll respond differently not being a biologic? It seems to be being prescribed more often now here in the UK & seems well tolerated from what I’ve read.

If you type in either the brand name or generic & under Filter results select NRAS you'll find previous posts. These may help too nras.org.uk/jak-inhibitors-... versusarthritis.org/about-a...

Iluvgardening profile image
Iluvgardening in reply to nomoreheels

Thank you so much for the information, I will check out the sites😊

wishbone profile image
wishbone

Hi, I'm taking the JAK Inhibitor Baricitinib. I too have a lung condition and am concerned how it could react. I've been taking it for 18 months and so far so good. My only real issue to date has been a prolonged sinus infection a few months back, which has cleared for the most part but the sniffles remain. I'm taking the lower dose of 2mg instead of 4 which seems to be prescribed more often. A big plus with these JAK Inhibitors is that they leave the body within a few days if you need to stop them due to an infection. My respiratory consultant could offer no guarantees that the drug would not affect my lungs...I live in hope!.............................................

Iluvgardening profile image
Iluvgardening in reply to wishbone

Thank you for the reply, its always a little scary trying a new med. I too will be hopeful. Thanks for the info about the meds leaving the body quickly that is always a concern when an infection occurs. Hoping you continue to improve.😊

wishbone profile image
wishbone in reply to Iluvgardening

Thanks, and good luck with it.

Sanbanan profile image
Sanbanan

Hi there.

I have been on Tofacitinib for over 6 months now also for Psoriatic arthritis and this has been a godsend for me.

I previously failed on so many other biologics that this has been the first to work really well for me.

I had a knee replacement nearly 3 weeks ago and had to come off it for surgery and I certainly noticed increased pain & stiffness when I wasn't taking it.

I make a point of taking it with food and drink plenty water and have had no side effects.

Hope it works for you.

Best wishes x

Iluvgardening profile image
Iluvgardening in reply to Sanbanan

Awesome, thanks for the reply. I am researching and Praying to decide if I want to give it a try. I also had two knee replacements this past year, 6 months apart. Be sure and do your exercises it makes a world of difference! My knees are feeling good now. My hip is giving me lots of trouble though. I am hoping not to replace it! I don't like surgeries! But I am thankful for the knee pain relief😊Thanks again for the info.

Sanbanan profile image
Sanbanan in reply to Iluvgardening

No problem.

This is my 2nd knee replacement, the last one being 3 years ago and it's been a great success so definitely doing all the exercises again 😁

I'm enjoying the enforced nap during the day which I could get too used to 🤣

Best wishes.

HanaleiBa profile image
HanaleiBa

Run do not walk!!! Seriously, this is the drug everyone in the US is going into - slight exaggeration but not by much. My mom is on it. Many consider it a miracle with symptoms and it’s easy. The NHS has refused me so far - too expensive. If you can get on it, don’t hesitate. :)

After seven years of severe RA my friend just started Xeljanz and she feels better than she has for 7 years. She said it has changed her life, now she can function.

lolamylo profile image
lolamylo

Saw my Rheumy nurse and this drug was mentioned-I have both Rheumatoid and Psoriatic Disease and nothing has worked since diagnosed over 8 years ago! Waiting to hear if it will be funded. Have been on many biologics etc wth no success so far. I am prepared to try anything within reason. Need to get back to a normal life with no brain fog, severe fatigue and constant pain and discomfort, I know a lot to ask!! Good luck with this xx

jacbub103 profile image
jacbub103

I have been on this for 18 months after trying all the usual ones , it’s given me my life back and so easy to take , one pill twice a day , makes travel so easy as well x

Yogi-bear123 profile image
Yogi-bear123

Been a great drug for me having failed or bad side effects from biologics. Not 100% but def has been a godsend. I know that I’m lucky to be on it. Only side affect is sometimes a sore throat at night but that’s about it! Easy to stop to... got norovirus over Xmas and stopped for 3 days no problems... good luck ,hope it works for u.🤞

TxKelly profile image
TxKelly

I'm on Xeljanz - 2nd week. The most noticeable thing for me is actually having a clear mind and energy. I tried the other drug in the same class - Rinvoq and had immediate lung/sinus issues. Quit that after a month.

I think I need 2 a day. 1 doesn't seem to ease all my pain (asking too much?). The Rinvoq worked 100% for pain relief - but I couldn't seem to ever get enough air.

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