Tell me how your rheumatoid arthritis was diagnosed?

[lampyyy]

About six months ago, I started having severe knee pain. I mentioned rheumatoid arthritis to the doctor (I saw so many because they kept dismissing me) every time and they all told me no, my pain isn’t symmetrical and it is only in my knee and not my hands or toes.

I was referred to an orthopaedic surgeon after an MRI as a nodule was discovered. It was biopsied and I was told it is a necrotising granuloma, which can be common in patients with RA as well as other things (like TB, which I don’t have). Now I have pain in my other knee. But I’ve essentially been “discharged” as a case solved even though it feels like it isn’t at all!

I know I need to now go back to my GP and talk - yet again - about RA and ask for a referral, but I feel exhausted from it all.

But I am still experiencing pain and swelling.

I did a private blood test because I just wanted peace of mind and it came up negative.

I have a few questions: how was your RA diagnosed? Is there a definitive way of saying yes or no?

And, finally, is it worth going privately? Are the waiting lists to see a rheumatologist long? I don’t want to spend the money but I just want an answer!

Post covid swelling of feet then widespread joint pain and swelling, night sweats, high pulse rate, fatigue, raised CRP. unable to move in the mornings. Also seronegative. Now on prednisolone and three other drugs a year and a half later and still not under control

That sounds really, really tough, I hope it gets under control soon.

severe joint pain and swelling, pretty much every joint, weakness, fatigue. My Rheumatoid Factor and CRP was through the roof.

On Methotrexate, Hydroxychloroquine and have Rituximab infusions every 6 months as two other biologics I had didn’t work. It has also at times affected my heart and eyes.

I’m still on regular painkillers after 7 years.

Small amount of pain in one thumb for months, then pain in one knee and one ankle. As soon as it was three joints I knew it was something wrong throughout my body rather than just random pain. Straight to GP, immediate referral to hospital consultant - took a few months to see them.

The symmetry argument is nonsense - I was diagnosed 20 years ago and still don't have symmetrical pain. Get back to your GP - do they have more than one GP in practice, if so, see a different person and insist on a referral. Go prepared - this might help https://nras.org.uk Maybe take someone with you who'll help you speak up.

If it is RA, it get worse over time and you need to get treated as soon as possible to stop it progressing/slow it down. Good luck.

RA doesn't have to be symmetrical.
Mine was originally diagnosed as Palindromic Rheumatism in 2015 after 5 years of to and fro to GP.
My CRP was high but not RF and I was referred to rheumatology.
Eventually it was diagnosed as RA. It still strikes randomly in different joints, never both wrists of both knees.
In my area my rheumatologist is a year behind with reviews, no idea about new patients so yes, if you can afford it I would see privately for a diagnosis.

Poor you. Pain is awful but even worse if you haven’t got a proper diagnosis.
Any other symptoms? Just to say necrotising granulomas happen in GPA, a type of systemic vasculitis. The are some bloods called ANCA which can point to this. It’s very rare and often GPs and some rheumatologists aren’t aware of it so I thought it worth mentioning. Vasculitis UK are great for information and advice if you find your symptoms fit at all.