change of meds

[Eiram50]

so, I’ve now been on most biologics and they are no longer effective so I’ve now been prescribed a JAK inhibitor ( RINVOQ). Has anyone been prescribed these? How have you experienced them? I have to be honest, I’m really frightened to start them. Any assurances would be hugely welcome

Marie

[Sanbanan]

Hi,I have been on Rinvoq for well over a year. It has possibly been the best drug I've tried as I have failed on lots of biologics previously.

I've had to come off it recently due to a nasty infection and surgery but hoping to start it again soon.

I take it with my evening meal & drink plenty water and I've had no issues with nausea, etc.

Hope it works for you.

Best wishes x

[Eiram50 in reply to Sanbanan]

Thank you. It’s the risks that concern me, especially as I am still a smoker. There something about the risk of sudden cardiac arrest that really frightens me- in a way that all the other risks with these type of meds, have not.

[oldtimer2 in reply to Eiram50]

You say that you are still a smoker -and you're concerned about the risk! It really is important that you tackle that risk...can you enrol on a giving up smoking programme? I'm sure you've tried before and I know it's not easy to overcome the addiction of smoking - but it's been shown to be a risk factor for Rheumatoid Disease and it is something that you CAN do.

[Amnesiac3637]

Hi. JAKs. Best drugs I’ve ever had. Targeted much more specifically, very few, if any, side effects and easy to take. Baricitinib was the first JAK I had after everything else known to science and worked from the second day. It unfortunately went on strike after I got Covid last year but am now on Filgotinib. Very similar, works, easy to take (I take it at night) and if you get into trouble with it it leaves your system very fast. Haven’t experienced Rinvoq but it’s very similar in mode of action etc. and another one easy to take and stop if necessary.

Don’t be afraid of these drugs, lots of people getting very good results from them and you, hopefully, will too. Best of luck.

[Eiram50 in reply to Amnesiac3637]

Thank you. X

[Doodlereggie in reply to Amnesiac3637]

This all brings back memories doesn’t it!! Xx

[Amnesiac3637 in reply to Doodlereggie]

It does indeed! Hope you’re still doing well on lower dose. I think I’m not but due for a review early next year. If I were a horse I’d have been shot by now………!

[Amnesiac3637 in reply to Amnesiac3637]

P.s just read your reply lower down so glad to hear you’ve gone up again and are doing well. Xx

[emmajj1971]

I was put on jak ini inhibitors during covid but ufortunately it didn't work for me I had baricitinib that affected my liver so I was put back on rituximab infusions. The medications are all different, what works for one person doesn't work for the next, it's all trial and error until the right one is found.

I would always say keep an open mind and give it a good try it might work for you x

[Madmusiclover]

I was on a different JAK. No problems at all other than prone to infection/shingles. About to start upadicitinib myself. Let’s compare notes!

[Eiram50 in reply to Madmusiclover]

Let’s!

I don’t have an issue with the medicine in and of itself. It’s the risk of sudden cardiac failure - there is no indicators that can be picked up in bloods etc- it’s the emphasis on “sudden”- it has just really frightened me, especially as I am a smoker. I have asked to be referred to the cessation clinics etc but I’m aware that this won’t happen over night and will be difficult- it’s all just very frightening for me.

[Doodlereggie]

Hi.I started JAK filgotinib 9 months ago and felt results after a few days with no side effects at all.I too was scared after biologics did not work for me and asked on here for reassurance,which I got from others on JAKs.It has changed my life completely.Because of my age,79,rheumy halved dosage last month and pain returned,so as from yesterday he has put me back on higher dose,which this morning I can already feel the improvement!Much better to take a tablet daily no more injections.I too take mine at night with plenty of water and it is fine.So,give it a try,with the reassurance that it only lasts in body for short time and is very targeted,and for many on here it has been a miracle.Keep us JAK devotees posted and Good Luck x

[Eiram50 in reply to Doodlereggie]

Thank you x

[SLCR]

I started Rinvoq 11 days ago. I had failed methotrexate, Imuran, plaquenil, arava and IV Orencia. I felt nervous too when I got the pills, it took me 2 days to convince myself to put it in my mouth. 3 days in I started to feel a tiny bit better, now 11 days in and I’m pretty convinced it’s going to work, much less stiffness, more energy and just something different. I’ve been dealing with this for 2 1/2 years so just feeling like I’m turning a corner maybe? My doctor said some improvements in 1 month and full effects in 3-6 months. I have to say my plan if I continue to take it, live as healthy as I possibly can. My current state doesn’t allow for much exercise but soon. I think being in good cardiovascular health is important with this drug. If it works I’ll do anything I can to maintain health. Good luck!!!

[Eiram50 in reply to SLCR]

Thank you and I am glad that you are having a positive response.

Like you, I spend time looking at the tablets, but have not yet been able to make myself take them!

My biggest concern is the risk of sudden cardiac arrest - there’s something about this that resonates with me and genuinely has left my frightened- especially as I am still smoking, although have reached out for support to cut down/ stop.

I am back in for another ankle replacement in the 29/12 and have been advised to just start the tablets after surgery, so I guess this gives me a bit more time to try get my head around things.

Marie

[SLCR]

Good Luck!!

[Eiram50 in reply to SLCR]

Thank you x

[J1707-]

I’m in the same position. I’ve been told this is my next drug .🤞this the one for you.

[Eiram50 in reply to J1707-]

I wish you luck with things going forward.