This prediabetic diet sounds really sensible and I really approve of your approach. Great that it seems to have helped as well. My dad and grandad were type 2 diabetes and I have been tested every year but all has been normal. I already have eliminated wheat, refined foods, caffeine and most dairy from my diet but I'm sure there's more I could try by googling a pre diabetic low carb diet - couldn't harm and maybe read the Paleo Approach which I was given for Christmas, but haven't yet looked at. I often wonder if I've cured my RA by my diet and exercise regime - but I could be just one of the lucky ones for whom it goes into remission after a few years of really aggressive drug treatments.

Great to have found a place where people understand nerve pain at last. Many thanks.
Mat

Hi again Synnove. I too had read that Rituximab/ Rituxan is a good biologic infusion for people with RA and SFN. I take it that your VectraDA test is the same as our DAS28 here in the UK? And that because your RA was only judged moderately active you didn't meet the insurance company's criteria? If so we are in exactly the same boat I think - although my RA is mostly low key these days. However my Sed rate/ ESR and PVC is often very high and fluctuates according to how stiff and unwell I am so I believe this counts for something with my rheumy and stops him dismissing my SFN symptoms as Fibromyalgia.

My thoughts are that the SFN for me has taken over from the joint pain and stiffness - it's as if my immune system can only attack one system at a time. So when the joint pain was at it's worst for two years the SFN was always there but as a warm tingle in the background like shebert. Then it seemed to blast through the RA symptoms and become the dominant thing and has stayed that way ever since - for over a year now. And I do feel it's got worse, not in intensity of pain but just much more widespread in it's distribution.

I also have strange bits of Raynauds in my toes and a follicular rash that comes and goes, dry eyes, nasal sores and bleeds and spells of dizziness, have lost my sense of taste and smell too and lately have been getting these headaches. I didn't sweat at all for a year and now I break out in weird sweats in my feet and hands suddenly for no particular reason. But no excruciating joint pain or swollen knuckles etc anymore.

So my rheumy will undoubtedly just shrug all the neuropathic stuff off and say there's nothing to be gained by trying me on another DMARD or starting a Biologic such as Rituximab. And I suppose this is why the diagnosis of RA is starting to count against me because I feel they hide behind it. And the fact I am so intolerant to drugs doesn't help. So frustrating!
Take care
Mat

Hi Mat,
The VectraDA test is a blood test that measures 12 different protein markers in RA disease.

My RA is right now acting up, and I just had X ray of shoulders today. Wrists,hands full of swelling with Synnovitis. Saw my rheumatologists yesterday.
So I do not know where my test scores would be if it was taken today.
This is really the first big flar up that I have had since diagnosed.

My SFN also goes in flares, has been worse than right now.

I have dry eyes, and just had the Schirmer's test done with positive for Insuficient tear production.

It is my rheumatologist that is taking care of a lot of SFN symptoms for me. She reads the neurologist"s notes. She also a lot of times " treat the patient, not the lab results" sort of say. She has been ordering all tests in the book, and I mostly have negative tests. I do have positive ANA.

I have a couple of different neurologists, one local, and one at the university hospital medical school that specializes in neuropathy. The last is the one who diagnosed SFN. He, also, just as your doctor, at first said that I did not need any skin biopsy. " I know you have SFN" he said. So, I think a lot of time the real good knowledgeable doctors know what they are dealing with. Then we have the aspect of insurance, where a diagnostic test result is needed for an objective verification of medical necessity.
Also bear in mind, my understanding is that getting diagnosis and understanding of neuropathy is rather new within medicine.

thanks for reading

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.

Mat,
It would be good if your neurologist and rheumatologist agreed that the underlaying cause for your neuropathy is RA.
From what I understand, there is not much treatment available for SFN other than symptom management until one can establish the real underlying cause and treat that underlying cause.
It is here, I think, the importance of the doctors' acceptance of neuropathy comes in. This disease has for a long time just been disregarded by doctors.

Only a person PN and SFN can understand the pain. I have had a few doctors, and I think all of them neurologists, just look at me as if I were a complete idiot or something when I explained my symptoms. The comments are too many to mention here.

I also want to say, that regarding Rituxan, there have in fact been a few serious side effects, just thinking of your intolerance to meds.

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?

I didn't have any cardiac tests - just nerve conduction, mri of brain and neck (all normal) plus the awful lumbar puncture (7 attempts to tap!) and serum bloods.

However I did wear a Holter monitor last June for severe heart palpitations and dizziness (later found to be Amitriptyline). My heart was sound apart from ectopic beats which have stopped now. I have bizarre sweat patterns now and have lost my sense of taste and smell as already said. I believe these might also be connected to autonomic neuropathy?

I did tell the neurologist all this and wrote it all down for him. I was told by my opthalmologist that my eyes are pathalogically dry. He doesn't use the Schirmer's but instead he used a tear break up test which he says is more up to date and accurate. I use drops and ointment daily. My teeth are fine and I never have corneal ulcers so I'm told that it's all part of my RA rather than Sjogrens.

I guess I will just have to wait and see what the neurologist surmises. Unfortunately if nothing else flags up I think it will be seen as a rheumatology matter and as I've said my rheumy consultant isn't a very forward thinking at all.