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Old 08-06-2016, 04:08 PM
MAT52 MAT52 is offline
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Join Date: Feb 2015
Location: Scotland, UK
Posts: 529
8 yr Member
MAT52 MAT52 is offline
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Join Date: Feb 2015
Location: Scotland, UK
Posts: 529
8 yr Member
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[QUOTE=MAT52;1219627]I can't tell you how much I relate to what you are experiencing. My seronegative RA was pretty much as you describe yours. I too was overweight, also grieving having lost both parents suddenly and prematurely. I was menopausal so assumed it was all hormones but it did seem strange to have both wrists, both sets of knuckles and both knees all excruciatingly painful. I thought it was a combination of my weight, hormones, grief and hypothyroidism with osteoarthritis.

My Rheumatoid Factor was a low positive and rose over 2011. My inflammatory markers were soaring. But the small fibre neuropathy had started the year before and then these and Raynauds (which I'd never previously suffered from) would flare in tandem. Like you I couldn't drive - couldn't turn the key in the ignition even - wrists felt fractured and I lived in splints. Then I was given a steroid injection and my symptoms clean disappeared for a few months. Since then I've had methotrexate and three others plus several long courses of Prednisolone - which masks things brilliantly but made me eat more. I can't take NSAIDs anymore.

It's only now that I look back on my pre-RA days and see a rather poorly woman with severe eczema, alopecia and rhinitis. I think I've had Sjogrens for decades. The RA was just a new manifestation of the same thing. In this sense it wasn't proper RA - it was synovial swelling caused by the Sjogrens.

I think three years is quite a long time to put off diagnosis for and still think your peripheral neuropathy may be an unusual complication of your RA. And you do at least have certainty with your diagnosis of RA - which is more than I ever did. Even my original rheumy said as he diagnosed me I should "keep an open mind - things could change". Methotrexate with Hydroxichloraquine knocked my Sjogrens RA into the long grass but it took about six months to a year. Hang in there - there are lots more medications a seropositive person like you can try. Take care. Mat x[/QUOTE

Please don't worry about hijacking my post - you aren't really. I haven't come across anyone else dealing with this type of problem either. I don't know how severe or widespread your neuropathy is but mine affects my entire body including my face. It didn't show up in nerve conduction tests or brain MRI but it did show up in my CSF taken with a lumbar puncture early last year. The paired oligloclonal bands they found indicate various systemic processes including primary Sjogren's - but not RA. My presentation of Sjogren's is very like MS.

This is why I'm so relieved to have a new diagnosis that I can relate so much better and which probably explains my non length dependent SFN at last. My new rheumy said that SFN is not associated with seronegative RA. He did not mention seropositive RA in connection with neuropathy because I don't have this presentation. This and my clear positive ANA and immunoglobulins A and G led him to request the lip biopsy which vindicated my research journey and all the invasive tests I've had. I also have strong signs of autonomic neuropathy with nasty GI/ swallowing problems.

Anyway I wonder if this link I just found may be of interest to you:
Medscape: Medscape Access
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Sjögren’s, Hashimoto’s and Systemic Sclerosis with Raynaud’s, Erythromelagia and small fibre polyneuropathy, GI problems top to tail, degenerative disc disease and possible additional autoimmune diseases
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