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Old 02-10-2015, 03:41 PM
MAT52 MAT52 is offline
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Join Date: Feb 2015
Location: Scotland, UK
Posts: 529
10 yr Member
MAT52 MAT52 is offline
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Join Date: Feb 2015
Location: Scotland, UK
Posts: 529
10 yr Member
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Quote:
Originally Posted by Synnove View Post
Mat,

I did you dicuss the Rituxan treatment with your rheumatologist? Or your neurologist? You see, I think it is a treatment geared for and approved for the treatment of RA, so in fact it would only be a bonus effect for the SFN.

When I mentioned it to my neurologist, he said he would not recumbent it due to the serious possible side effects. But, he admitted if I had the treatment, it would probably help the SFN.
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.
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"Thanks for this!" says:
Synnove (02-10-2015)