Hi I'm new here and have masses to learn still. I live in a remote island of the north of Scotland. I want to know more about whether disease modifying drugs for rheumatoid arthritis would help slow down an immune mediated small fiber neuropthy?

I have tried Amitriptyline (heart palpitations), Gaberpentin and now am taking Duloxetine/ Cymbalta 30mg daily. It doesn't seem to be doing much and I have a worry about taking a drug that may be very hard to come off and is only ever going to mask my symptoms rather than slow them down or address the autoimmune side of things. Is this a valid worry or should I just accept that this is all that can be done for me?

I had MRIs of brain and cervical spine, nerve conduction tests (EMG and one for the small fibers) and all was normal apart from some arthritis in the neck. I also had a lumbar puncture and various specialist serum blood tests - including for Lyme. The specialist blood test results aren't yet back but my GP explained that my lumbar puncture had shown Immunoglobulin in my CSF - which he said confirms that I do have an immune mediated SFN but no signs of demyelination.

Presumably demyelination would have shown up in the nerve conduction studies because it affects the central nervous system and the large peripheral nerves rather than the small fibers?

Is this now likely to be classed as "idiopathic" and should I push to have a skin biopsy taken now or will this not affect my treatment options much? I was told by my neurologist that my symptoms are fairly classic of an advanced SFN which is progressing.

My rheumatologist has so far been completely disinterested in the SFN and says that as my RA is currently only moderately active and as I haven't tolerated three DMARDs or steroids it's best that I just treat the symptoms of nerve pain until the RA comes back as synovial swelling in my joints.

I don't know whether my lumbar puncture result will change anything with him because it's pretty non-specific I believe? The next drug my neurologist wants to try me on is Carbamazepine. I've read up a bit and am very reluctant. Presently doing okay on regular Asprin (a new experiment by my GP) and Duloxetine although the tingle is still very widespread and NSAIDs affect my tummy quite badly after a while. My main problem 24/7 is with waterlogged sensation in legs and burning/ scalding/ freezing in feet, ankles, calves, knees and hands, wrists and elbows - especially bad at night. Also with nerve pain on the inner side of my ankles.