Anyone tested negative for RA with all symptoms

I have osteoarthritis in my thumbs, had surgery 3 1/2 months ago on right thumb. Now I have stiffness in both hands, fingers, toes and pain in my feet along with swollen knuckles. Just got tested for RA and tests came back negative. Any thoughts on what I should do next? I can't live like this . I can't go to work,gym or do much of anything. I'm only 56 and was healthy until this happened. Thank you . Kay

[helixhelix]

Keep nagging your doctors! Getting a diagnosis can be tough as many GPs are pretty useless when it comes to knowledge of the disease, and health trusts are brutal about refusing referrals for people who are seronegative.

So, first off do you know what tests you had done? Often GPs only test for the rheumatoid factor and what you need is to have that and an anti-CCP test as this is more specific. So if this hasn't been done then push for it.

And presumably also had your inflammation levels tested? Either or both CRP and ESR? As again people are very individual. I have naturally low levels which are always under 30, even when every joint in my body is swollen and inflamed. You might have to become your own advocate, and argue your case for a referral based on swollen joints rather than blood tests. Take photos of swelling so you have a record. If you can, ask for your hands to be examined under ultrasound, as this shows up inflammation better.

The other approach that can help is to ask to try out prescription strength anti-inflammatories or steroids. As if these help loads it's another indicator that you have an inflammatory problem. Essentially your goal should be to get a referral to a rheumatologist.

But basically it can be a slow hard journey to find out what's wrong and get proper treatment. Sorry, but good luck!

[dwsurquhart in reply to helixhelix]

I totally agree with Helix.

I have also tested negative for RA, however my crp was through the roof. Supposed to be less than 3.0 mg/L. Mine was up around 100, then went higher before biologics brought it down.

I hate to say this, but try prednisone. It is a steroid anti inflammatory. It is a nasty drug but it does work. Only stay on for a short time and low dose.

If you cannot get a refferal to a rheumatologist, try to get to an internist. Go to your GP and ask for a letter then go to the hospital. That is how I got past a huge waitlist in BC Canada.

My rhematoid factor is zero, and I have been told it is seronegative RA.

Hope all goes well.

Scott

[tinamwalker]

I would keep going back. On my 9th vsit thet actually put an emergency referral through. I was seen within 2 weeks and diagnosed with sero negative rheumatoid arthritis. 18 months later it is under control with meds and my bloods are still coming back negative. I hope you soon get sorted x

[Lolalaley]

Read and talk to your doctor about Seronegative Rheumatoid Arthritis. This information may help you. That is my rx and I take mtx, physical therapy and treatment for Rheumatoid arthritis. Many blessings!!

[marie66]

Me too sero negative RA diagnosed straight away by Rheumatologist. Mind you took 6 months to get to him - went orthopaedic surgeon first as initially thought carpal tunnel - but 5 minutes with main man confirmed RA. Couldn't miss it really, my hand/wrist and arm were like the elephant man nobody missed gawping at that....shops, public transport you name it people looked real hard!

Methotrexate and steroids brought swelling down a bit but still chasing some real relief. M x

[Hidden]

Kay I am sorry for you and I got diagnosed at 56 also. Yes, you need a rheumy! I do not test positive, but I have all the exact symptoms you have and my GP sent me to a Rheumy and he DX'd me with Inflammatory Arthritis, which is just a way of saying you have an autoimmune Arthritis, we are just are not sure which one it is. I am on Plaquenil. It is not helping so much these last few months, but I see my Rheumy in a few weeks.