What next?

[Haz58]

So here I am again. Fingers swelling and painful. Shoulders starting again. Right leg from buttock down to ankle pain coming back. Looks like after 1.5 weeks of being off Prednisolone (again) it's all flaring up again. So it's not the Sulfasalazine (of which im now on 6 a day, that's kept it at bay it's the steroids. So after trying MTX tablets, MTX Injections, Leflunomide and now sulfasalazine, that's either made me very poorly with side affects or with sulfasalazine not working, what's next? Going to call Rheumy nurse tomorrow. Totally fed up. So glad we got away for 10 days and had the steroids to keep it at bay during that time.

[vonniesims]

Oh no, so sorry for you. Hope Rheumy nurse can sort you out soon 🤞

[janmary]

at least you now know what was working. Hope you get a helpful plan from your team

[Green230461]

Do you see me in your mirror? Snap to all you have! I am now on baricitinib tablet every day and much better! Ask about it! I still take sulfasalazine as well 🥰

[Haz58 in reply to Green230461]

It's horrid isn't it Green! I've rang the Rheumy nurse and waiting for a call back. Fingers crossed they can help. 🤞Im so pleased it's helping you. X🌹

[oldtimer2]

Sounds as if you should be eligible for a biological treatment. Have a look on the NRAS website at treatments available so that you are well informed when you speak to the rheumy team. Good luck!

[KaysDad]

I agree with 'oldtimer2'. Those drugs didn't work for me either but a biologic worked wonders for me so don't give up hope. My biologic is Rituximab but nit doesn't work for everyone.

[Joannos]

Hi my consultant after trying all of the above with me, which didnt put me into remission, tried rituximab, my case went to panel? That worked, but post covid and as I worked in a school we decided to move to baricinitib as the drug has a shorter shelf life in your body. So talk to you GP about biologicals. I haven't had a flare in 6 months, as today discussed reducing my medical. Good luck

[Haz58 in reply to Joannos]

Thank you Joannos. 😊 The nurse said today my Rheumatologist will probably add hydroxychloroquine to the sulfasalazine but the Rheumy is on holiday this week. So I've got to have bloods done Friday and an eye test on Wednesday so she'll have the info she needs on her return on Monday and I've got to ring then. I get the impression they don't want to put me on biologics. Something to do with heart disease in my family and I smoked for many years. So I'll have to wait and see what she says. But I'm not sure my eyes are in a good way anyway for Hydroxychloroquene. I'll find out Wednesday. I already have to put 2 kinds of drops in my eyes every day already. This is why I'm worried about what's next for me. At least I'm more informed by the answers on here to ask more questions about the way forward. 😌

[Joannos]

Hi sorry I didn't notice your reply. I was on hydroxychloriquinne as well. I came off it.

I too was a smoker gave up 20+ years ago. I had to have lung xrays then they discovered latent TB so a course of antibiotics, everything is OK now

Push regarding the biologics, the right one can be life changing

Jo

[Haz58 in reply to Joannos]

Thanks Jo. I had to come off the hydroxychloroquine. Gave me dreadful nightmares and muscle aches. The next step is Etanercept all being well. Just waiting to hear about x-rays. X

[Joannos]

Out of all the drugs, I never liked the hydroxychloriquinne. Funny aren't we. I have been lucky enough now to reduce my MTX , I take by injection thought I was having heart attack when took orally. I wish you good luck with your xrays and new drug. Fingers crossed 🤞. My Dr told me there are 100s of drugs to try, they are just trying to find the one which switches us off.

Jo