How did you get a diagnosis for rheumatoid arthritis?

[ra89]

It all started with crazy left knee pain. The pain was so bad some days that I couldn’t walk on it, and totally swollen. No injury etc.

An MRI found a nodule inside my knee. It was biopsied and it is the sort of nodule you sometimes find with rheumatoid arthritis.

Before this biopsy, I mentioned to every doctor that I was worried about RA. I took a blood test and it came back negative. All doctors basically said “no, it’s not that” in a very dismissive way. Now that the biopsy has happened, I think I’m going to be referred to see a rheumatologist.

I’ve had gum disease in the last, I have coeliac disease and raynaud’s and - I discovered last week - my aunt has RA.

I’m depressed and frightened that this is what I have.

Because my blood test was negative, how will a diagnosis go? How long will it take to wait to see a rheumatologist on the nhs? And what tests will they do?

Any help so appreciated! I’m scared and in pain!

I saw my GP who referred me to specialist, who confirmed. It didn't take long, about 2 months. I didn't have serious pain though, just swollen fingers.

I had sudden onset. One shoulder then the other about a month later. Gp did blood test for Rhuematoid Factor which was strongly positive, then referral and diagnosis. About 3/4 months in total.

Did anyone else start out with a negative blood test and then get the diagnosis?

How has life been after diagnosis, and on treatment?

I had negative tests to begin with. Sometimes early on I think it's difficult to diagnosed unless in a flare. I had to have multiple bloods taken before finally being diagnosed. It didn't initially show in the RA levels for the test but I did end up with positive anti bodies for SMA, ANA and another I quite remember. It took two years to diagnose. but this was during the pandemic I was 35 at the time so I think age meant they weren't thinking RA at first.

Flares can last months but it did go into remission for nearly 3 years at one point. Coming out of a 7 month flare atm.

Have only been given ibuprofen or naproxen for pain management so far. Some days are hard af but others just mildly uncomfortable. It hasn't stopped feom living life yet

Could be lymes arthritis. Is only one side of your body affected? Does it ever move? From knee to shoulder for example? Are you outdoorsy?
Usually with RA it's your smaller joints that are affected first.
Have a read up on lymes arthritis, you'll need to be informed because in my experience rheumatologists are very un-clued up about it.

Surely your RA is not being managed solely through pain management? That is mismanagement. You need specific RA meds to treat the cause, RA causes preventative damage so the sooner you get specific meds the better. (This is to poster above).

OP you sound more clued up than the doctors. Whenever you get to rheumatology they will hopefully sort you out as it’s common to have negative blood results. Mine were strongly positive so it’s not a journey I’ve been down but I know it’s common. It’s very time-sensitive, the sooner you start being treated the more preventative it is as it’s a progressive disease.

its changed my life but I’m in remission right now and with the right combination of meds you can aim for that too. If I were you I’d go private to rheumatology for a fast diagnosis then they refer you back to NHS. Don’t wait around for a diagnosis. Good luck.

If blood test for RA factor are negative it's called zero negative RA. Harder to diagnose as they will rule other things out first.
My sister is zero negative and presented the same way as you with sudden knee inflammation so bad she was hospitalized. Took a while to diagnose.

Do they actually do anything for it?
I'm sure its have it in my fingers

The diagnosis will look at a range of things. Blood tests for inflammation and CCP. Joint swelling and stiffness. Your health generally. Fatigue ( like first trimester pregnancy fatigue and you can't get out of bed or think ) is a very common indicator.

I should have said sero negative. Not zero 🙄

I went from "normal" to almost bed bound in less then a fortnight. As every joint was affected. My RA had been masked for ages by being almost continually on prednisolone.

When I started light therapy for my eczema I stopped the prednisolone and had a massive flare up. Luckily I have an absolutely fantastic GP who sent me to rheumatology having already done the bloods needed for dx.

My inflammation markers were around 350.

Took about a month from being seen by GP to starting methotrexate from rheumatologist. Largely as my GP pushed for me to be seen ASAP.

Good luck OP