Really!? Where do I go from here?

[StillSmallVoice]

Just on for a moan really. Have had RA since I was twenty. Now sixty, so forty years. I was on industrial quantities of anti inflammatory medication for years, and baulked at gold or steroids, because I watched my Mum take them, and and she was still very disabled.

Methotrexate was a game changer. I have been on 25mgs plus hydroxyqchorochine (soz - should be able to spell it by now) and am now on my third biologic.

My hands are turning into claws and I type stuff for a living. My very good clinic is telephone only and has just shifted my July appointment to September.

I know I just need to phone up and ask for a steroid injection, but I think I am just really scared that I will go back having to adapt to being quite disabled, but being less resilient because I am so much older.

Just scared. I can do pain, but need to open jars and pick stuff up.

Same situation as you - steroids occasionally have been a life saver!

Can I ask which biologics you're on / have tried?

(I'm similar age, with PsA.)

Mmm... not great with names. Humira was great for a long time but stopped working. Rituximab (or something) never started working. That's the one where you go to the hospital for an infusion, and with luck you don't need them often. I am now on Barictitub which is newer and works a bit differently.

Probably just need a steroid jab to get back on track.

Of course, some Kiwi mussel or giving up potatoes will cure us all!

I'm on Humira (aka Imraldi / Adalimumab) now, @StillSmallVoice. It's been very good. However my blood test results aren't great (low white blood cell count), and even after two covid jabs I have no detectable antibodies.

Anyway, in your shoes I'd ask for the steroid injection to re-set yourself.

I think you're right. I am usually OK but was feeling a bit sorry for myself yesterday. Thanks.

Good luck today if you do ring your GP

Of course, some Kiwi mussel or giving up potatoes will cure us all!
Don't forget tumeric and make sure you go gluten free

I don't understand your objection to steroids, especially as you clearly have active disease. I have had RA for about ten years and recently had cancer as well as other conditions. My rheumatologist therefore won't give me biologics or MTX and I take oral steroids long term. They work, they get rid of inflammation and keep me pain free and mobile. Yes there are potential long term side effects but if you had a short course that wouldn't even be a risk.

Of course, some Kiwi mussel or giving up potatoes will cure us all!
Don't forget tumeric and make sure you go gluten free

My parents used to send me cuttings from the Daily Mail about 'miracle cures'. It usually involved either an experimental drug with massive side-effects that wasn't even available yet, or poached goat spit.

My great success was Tocilizumab. Total game changer. Had one year off it because of other issues and really noticed the difference. Swollen knees, rubbish blood readings. After eight weeks back on it things are settling down again.

@StillSmallVoice

I think you're right. I am usually OK but was feeling a bit sorry for myself yesterday. Thanks.

That's my Number 1 indicator for needing a steroid pulse. Inflammation affects my mood more than even my joints/tendons/skin. As soon as I start feeling a bit woeful, I make the call and the cloud lifts over the next few days after the shot (or by teatime on the worst flares).

I'm on Cosentyx now, which works really well for me (PsA), but when I was developing antibodies to Humira, my mood knew before my body did - they actually did the antibody test specifically because I said I could feel my mood dipping and gave me an im pulse to top me up every 3 months until the Cosentyx was having a fuller effect.