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Old 02-10-2015, 04:24 PM
Synnove Synnove is offline
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Join Date: Jan 2013
Location: Florida
Posts: 314
10 yr Member
Synnove Synnove is offline
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Join Date: Jan 2013
Location: Florida
Posts: 314
10 yr Member
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Quote:
Originally Posted by MAT52 View Post
Thanks - this is all a little different to my set up in a remote Scottish island of course but broadly speaking the issues are the same ie money and risk of powerful drugs versus disease. I have five or six friends who's RA is dojng very well on Rituximab so I realise it's more often used for RA but it is also used for Lupus and occasionally for Sjogrens I believe.

The main difference between us is that currently my joints are fine. I haven't had synovial swelling for over a year. My RA started after my SFN symptoms too - around four years ago now but the SFN started about five years ago very mildly. My GP referred me to a rheumatologist on the basis of my symptoms, high sed rate and a low positive rheumatoid factor. However all my other antibodies have been negative including ANA and my rheumatoid factor dropped to borderline after two years on Methotrexate plus two other DMARDs. So my rheumy told me he thinks for now that my seronegative RA is not active enough to worry about unless it comes back in a flare form again. Mind you this was on 1st August and I haven't managed to see him again since but he says he will see me in his next clinic in March.

I think what should happen for people in our shoes is that the neurologist abd rheumatologist should consult each other where there is overlap. The drugs we are put forward for need to work as broadly as possible. But for some reason I can't understand joint disease takes precedence over peripheral nerves. I think I would like to try IVIG before Rituximab as it feels less risky and I fear nerve damage more than joint damage personally. Many joints can be replaced or fused but dead nerves can't repaired.

Plus I feel much sicker now than I did when my RA was flaring.

I don't know if SFN affects the upper abdomen and back too sometimes but my stomach pain and nausea are so bad tonight that I think I might be sick. I am so drug intolerant that this could all be due to Duloxetine but I just don't know what's what anymore.
Mat,

Often when one has SFN one also have autonomic neuropathy. You could ask you neurologist the next time you see him regarding work up for this.

regarding your GI for example, have a gastric emptying test, there could be gastroparesis. There could be gastric reflux called GERD, which often happens with neuropathies.
Autonomic neuropathy would further be manifested by a Shrimer's test for dry eyes.
Did you have cardiac tests for autonomic neuropathy?
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