JAK inhibitors advice

[Cherryblossom12]

JAK inhibitors advice

Hi everyone

After nearly forty years of aggressive RA I have now been offered a JAK inhibitor. Having worked my way through many drugs( failed on humira) I am pleased there is something else out there for me to try but am concerned that it is so new. I am now 70 and after 2 new knees a hip and many foot ops I’m getting a bit down. I’ve also had four distal tibial and finial fractures in the last 2years due to rubbish steroid damaged bones( I’ve been on pred for 35 years!!) My Rheumy hopes I may be able to reduce pred with the JAK drug. I’d love to hear from anyone whose tried these drugs, what side effects, effectiveness, or any help/ advice to me. I will continue with my 20 Methortrexate and celecoxib.

Many thanks

[oldtimer]

baricitinib (Olumiant) and tofacitinib (Xeljanz) are the current ones available in the UK now. If you put either name in the search box you can find previous posts about these two drugs. There's also an information page on NRAS website.

My sister was/is in a trial for tofacitinib for six years. She's now 83 years old and is doing very well on this. She is almost pain free and more mobile than her younger sister. The only side effect seems to have been a slight rise in her cholesterol levels. Being in a trial means that she gets excellent care and frequent monitoring too.

Hope that helps to put your mind at rest.

[Yogi-bear123]

Hi, I’m on tofacitinib after trying a lot of treatments. It’s not perfect and I’m still on low dose steroids but much lower than before this drug. For me it’s been very good as no side effects whereas everything else gave me various side effects! As a matter of interest have u been on any osteoporosis medication ? And what has your steroid dose been over the years? I’ve got steroid induced osteoporosis and will be having the zolendronic acid infusion at some point. Good luck with the new med.

[HanaleiBa]

Quick reply as I’m off to work DO IT!!! In the US, major health systems (Kaiser) are shifting their patients to JAKs. My mom has been on Xeljanz (a JAK) for 2 years and it’s the best med yet for her. She’s 73 and has had RA for 30 years. Everyone is different - but do it! You may find it’s as great for you as for so many others. I’m happy to hear the NHS is willing to approval JAKs here - I may be failing the latest biologic, and JAK is where my US rheumie (the best doctor in any field I’ve ever been to - she’s saved my life!) to go to next. I was afraid I wouldn’t be approved here as the NHS is to difficult. Good luck!

[Al1954 in reply to HanaleiBa]

I have had breast cancer and lung fibrosis thats why i cant be put on Xeljanz i dont know if any one here is on some biological after cancer not being Enbrel or Rituximab i would so much apriciate coments.Thank you all

[Hidden]

Hi, like you I’ve been on numerous medication after 22yrs with RA and just recently having a hip replacement ( April ) I’m now taking Baracitinib and feeling much better without any side effects whatsoever. I’m still on low dose steroids 7.25mg atm and hopefully 🤞🤞will eventually be able to manage without them.

Hope they work for you 🤗X

[Ruby2002]

Hi I’ve been on Baricitinib for five months. I’ve had RA for almost 30 years and over the years I’ve been on three other biologics (the best was Infliximab but this stopped working after approx 10 years).

On the upside, I’ve had no side effects from this drug whatsoever. On the downside it hasn’t worked for me and I’m just about to come off it and start on Rituximab. I’d say give it a go, it’s by far the easiest biologic to take as it’s a tablet, just make sure you have your regular blood tests and a cholesterol check as it can raise this.

Good luck!

[Recorder500L]

Yes, try it, I have had RD for 30 years and tried probably most of the biologics. I started Baricitinib in September 2018 and indeed it is the best drug offered to me with no side effects. Take Care.

[Feta]

I’ve been on Baricitinib for almost a year. No side effects, I still take methotrexate, hydroxychloroquine, and low doses of steroids but I find it very effective. I still have occasional flares and still need pain killers but I can certainly recommend it to anyone thinking about trying it.

[Leics]

Go for it !! I’ve been on baricitinib for almost a year now had a few glitches but prednisone is down to 5mg and I’m like others hoping to get rid of steroids completely soon. No side effects on baricitinib and it’s a complete life changer. I was in a very bad way before starting this treatment, we can all be different but if your current treatment isn’t working for you then what have you got to lose. I have to say also that baricitinib starts to work within a few days not months like most treatments I started to feel the benefits after about a week it was subtle but new I was starting to improve. Good luck I hope you have a positive result.

[Al1954]

Has anyone had cancer after biologicals? And still are having them? .Whitch please? Thank you all