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.

I can't imagine this would be classed as "idiopathic' now that you have the confirmation of an immune mediated process. It seems obvious that you have an autoimmune process and there fore treatments for this should be considered.

Personally, I would push for the skin biopsy as it not only provides detailed information on the condition and percent of nerve fibers, but the test can be repeated at a future time (after treatment) to check progress in regards to both the condition and percent of fibers, but whether your treatment course is working.

It is a minimally invasive procedure that is tolerated well...even for repeat testing.

Due to the autoimmune process, IVIG should be considered. It has documented success with SFN due to an immune mediated process.

I'm not surprised by your rheumatologists disinterest...SFN is a neuro problem and not something he would treat. BUT, that being said, he should be in contact with your neuro for proper coordination of care since the SFN is autoimmune based.

Thanks so much for your reply. I was dreading being told by my doctor that this is idiopathic or even worse, all in my head. So I felt hugely relieved when something showed up to be honest. I then forgot to ask my GP about the skin biopsy. I suspect they will say it isn't necessary now that the high immunoglobulin has been found and the SFN is my main symptom presently so this is enough proof for them. However I will certainly push for the reasons you outline. I have no issues with skin biopsies - have had some already from my neck for possible Lupus (equivocal). However it may take about 4 to 6 months to happen now because the dermatology department has huge waiting lists.

I think my RA has been knocked into the long grass by immune suppressant treatments now and could stay there forever if I'm very lucky - although this would be pretty rare for RA. Maybe it's too busy attacking my small fibers to bother with my joints? My tendons and soft tissue appear inflamed though.

But I'm guessing that the NHS won't be wanting to cover costs of IVIG unless there is shown to be no other way. So the fact that I have RA that may one day return might be used as a reason to wait and see. IVIG isnt used as a treatment for RA.

Just guessing here but for some reason my rheumatologist seems to be regarded as the key consultant over the neurologist (whom I like much more!) - and joints seem to be viewed as more important than connective tissue or nerves. I really cannot understand why unless it's because joints cost a lot of money to replace whereas nerves are irreplaceable?

Thanks for giving me some hope that I may one day get onto a proper immune therapy. Mat

It is so hard to find a rheum interested in neuro. I just saw one last week but wouldn't you know she is leaving the state.

Autoimmune diseases almost all end up linked to some kind of neuropathy, even psoriasis has been linked. A neuro may be more likely to use monoclonal antibodies, IVIG or plasmapheresis to help you with your SFN, especially with a documented autoimmune disease.

Thanks for this Cyclelops. I don't know many people who have RA like mine that is mainly affecting the peripheral nervous system so much more than the joints. I use an RA forum often and although it's a systemic disease the main focus is usually on joint pain or drug intolerences or both.

Presently my stomach is doing the same as my feet, ankles, shins and knees and I'm horridly gassy with a permanemt gnawing sensation in my upper gut just like the one in my legs. I feel instinctively that this is part of the neuropathy but haven't a clue how to get this added into my autoimmune profile. If I go to the doctor they just call it gastritis and give me more Omaprezole - which helps at two a day - but not enough.

I'm still waiting to hear what the neuro has to say a month on from my tests. My GP says he must be still waiting for the results of the serum blood tests. It is rather frustrating when I am feeling so ill.

MAT52, What I suggest is that you consider treating the RA and immune condition with a whole foods plant diet. This will treat the source of the problem instead of the symptoms. You would eat relatively-whole vegetables and fruits, organic if you can afford it, eliminating processed foods such as refined oils, refined sugars, flour, and preservatives. I would also suggest adding exercise and a stress-management technique such as meditation. You might look to John Bergman on youtube for more info and read my other posts, where I list many other resources for healing yourself naturally.
Ron

Many autoimmune diseases come with GI dysfunction but, so does autonomic neuropathy which is a type of small fiber neuropathy. My shins bother me terribly, and I get a lot of GI issues too. With autonomic neuropathy, you never know what will appear.

Thanks Cyclelops. I know about this from reading posts on this site but my GP refused to acknowledge my GI problems as being autonomic. How is this tested for? I have dry eyes, sweat issues (mostly I don't sweat at all now but randomly I sweat somewhere profusely, have jaw nerve neuralgia issues now, impaired sense of taste and no sense of smell. The neurologist knows all of this and yet he doesn't refer to it at all in his letter describing my SFN as mild. Can it be mild if it's affecting me in so many ways? I realise this is a clinical definition but it still seems bizarre when my arms and legs are so affected - not to mention the rest.

I only found a brief mention detailing your stomach issues (gassy & gnawing) and this isn't typically the main complaints with autonomic GI problems. Maybe you mention other symptoms elsewhere, that I haven't read. But autonomic GI symptoms usually include early satiety (fullness), nausea, vomiting, pain/discomfort, delayed emptying, bloating, constipation, etc...all signs of dysmotility (which is the most common autonomic GI dysfunction).

Testing for this includes a gastric empty study, where you eat some scrambled mixed with contrast (you can't taste it), then lay on a table for a few hours while the nuclear imagining documents the movement of food. Results are based upon the percentage of food emptying the stomach within a set time frame (some tests are for 2 hours, some 3 hours).

Testing for autonomic dysfunction of sweating is the QSART (Quantitative Sudomotor Axon Reflex Testing) or Thermoregulatory Sweat Test (TST). Both are relatively easy, but they are typically only available at large academic facilities.

Hope this is helpful.

Thanks en bloc. The neurophysiologist doctor who did my nerve conduction tests explained that they haven't got the QSART or TST in this big NHS teaching hospital because it is terribly expensive and he feels it is too subjective i.e people can falsify about their sensations and this can't be proven or disproven.

He said that they therefore decided that it wasn't sufficiently useful to them in this neuro sciences department - given huge budget constraints they are under. But my thermostat is completely up the wall so I know what I know about myself and have therefore pretty much self diagnosed this autonomic neuropathy as part of the whole autoimmune thing with me.

Re the stomach I think I should push for an endoscopy before asking for a gastric empty but my GP keeps saying that this isn't necessary because he thinks it's dyspepsia. Personally I think it's too constant to be Gastritis/ dyspepsia and I do believe that I have a hiatus hernia and this is causing me all the trouble. When I bend forward from sitting position something bulges just under my ribs and makes it impossible to breath. I've had this since I was a kid but it's worsened with age. But I would need an endoscopy to prove it and then there probably isn't much to be done about it even if I have one.