Spine

[maye1]

Plaquenil has significantly reduced the peripheral joint pain but does nothing for my spine. When I take higher doses of anti-inflammatories, the spine pain, and Neuro symptoms (ataxia, swallowing, neuropathy, muscle weakness) are better controlled. However, I’ve been off them recently and the same symptoms that started 1.5 years ago are slowly returning.

When I first met my new Rheum about 6 months ago, he was adamant that it’s not CNS Lupus. Every doctor I’ve seen said I had a virus 1.5 years ago, one specialist called it Encephalitis. So I’m confused. Why would “viral” symptoms return, and return slowly, when stopping anti-inflammatories? I know RA can affect the spine, but my RF has always been negative. I have not been tested for Spondylitis.

Does anyone have any ideas or questions that I can bring to the Rheum next week?

Thanks xx

[Hidden]

I was just going to say, before reading your last part of this post, that Spondyloarthritis is almost invariably seronegative and actually 30% of those with RA and Sjögren’s are seronegative too. I’m very interested in this myself having posted on a UK PsA fb group to ask about my nail pitting and hand arthritis - plus previously diagnosed with seronegative RA. I wasn’t expecting the response I got with lots of people commenting that my hands and nails looked very much like theirs with PsA. Plus there’s ankylosing spondy of course which usually impacts on the spine.

I don’t think Hydroxy would make much of an impact on inflammatory arthritis of the larger joints - nor degenerative disc disease or osteoarthritis - all of which can and do overlap with our connective tissue diseases. X

[maye1]

I’ll have to look up PsA - I don’t know what that is.

Yeah, I’m not sure I have the right diagnosis. It’s been 9 years and no visual joint deformities - which I’d expect by now with RA.

I used to think it didn’t matter what the label was but it didn’t scare me; the thought of my spine degenerating scares me.

I’ll be more pushy with the Rheum.

Thanks Twitchy Xx

[Hidden in reply to maye1]

I had significant degenerative disc disease at both ends confirmed by MRI. PsA is Psoriatic Arthritis - which some have without psoriasis. X

[maye1 in reply to Hidden]

Thanks, I’ll have a look

Xx