How does an RA flare up feel?

Abbs06

Hi All,

I was diagnosed with RA in March and was put on a course of prednisolone which I was on until my salfasalizine kicked in…. At which point I felt much better and had less inflammation… But now I have been off of the steroids for the last month and I feel like I have gone back to square one…. Plus 1 stone in weight which I managed to gain whilst taking the steroids 😩 (I’m on the large side anyway, so the extra weight was not welcome)

My wrists and fingers are absolutely killing me, it’s hurting to even type this, not sure if I’m experiencing what you guys call a ‘flare up’ but I have lumps on where my wrist joints are and my fingers feel swollen and tight… From my shoulders down I just feel bruised and wince when I do simple tasks like answer my phone or push open doors, I’m 26 and have a 2 year old and we are currently actively trying for our second child so I don’t want to be put on anything that may affect that… But I just don’t know what to do 😩 My last blood test showed that my CRP and ESR levels had doubled, but I haven’t heard anything from my consultant so assume that’s ok?

I just feel so low at the moment and in pain but am trying to plod along and brush it off… not the smartest approach I know, but I think I’ve just hit a wall 🤦🏻‍♀️

Any words of wisdom or experience from yourselves would be great!

Abbie 🙂

stickywicket

Hello Abbs. I can't manage wisdom but I have put in the years with RA so have a fair bit of experience. Also I had my sons when I was at my worst so I can empathise on the small child front.

is it a flare? To be honest, I'd guess you weere never relllally out of your initial one. Prednisolone is wonderful at making us feel there's nothing wrong but there is and we can't stay on it forever.

I wonder how long you've been taking the sulfasalazine. It can take up to 3 months to properly kick in. In the meantime, if you've not been on it so long, your GP might be able to prescribe some anti-inflammatories which might help a bit to tide you over.

The raised inflammatory levels might be worth following up. As it's early days for you the feeling might be that, given time, the meds will bring them down. But all sorts of things can raise them anyway and rheumatologists don't always feel it's necessary to jump in immediately and do something. Again, your GP might be able to offer some advice.

The lumps might be rheumatic nodules which usually rock up only when our disease isn't being well controlled.

i think your best bet would be to ring your rheumatology helpline for advice. Unfortunately, 'trying to plod on', while very useful, can become our default mode and it doesn't always work.