Sad and confused... treating the symptoms or the underlying cause?
 

Hi - this is my second post here. At my neurologist's advice I started Duloxetine/ Cymbalta two months ago after having adverse reactions to Amitriptyline and Gaberpentin. I have managed to tolerate it quite well but find I'm clenching my jaw a lot and my appetite has increased - which isn't so good as I am a bit overweight already.However I'm tolerating it fine compared to awful drug reactions I've suffered previously. But my consultant and GP werent sure it was doing much either as the widespread tingling of the SFN has continued unabated.

So they suggested I try Asprin for the nerve pain in case it is Erythomelalgia which is causing the burning in my arms and legs. I started on it ten days ago x 3 daily with a stomach protector and at meal times. I have suffered a gnawing pain in my gut for ages - which comes and goes for me anyway but worsens with NSAIDs.

I don't know if the Asprin helped the nerve pain or not because I had such an awful headache I had to take a lot of Paracetamol too. Any improvement might have been from the Cymbalta 30mg

I'm used to upper abdominal gnawing pain as have had it for a few years, especially with NSAIDs, but this was more intense. Anyway on Friday night I ended up having a massive nose bleed in the middle of the night and waking to a blood bath plus blood in stools. I guess this was from ingesting a lot of blood in my sleep. But stomach discomfort has continued despite stopping the Asprin.

The idea was to drop to the lowest dose of Cymbalta and see which was helping - the Asprin or the Cymbalta if either. But I stopped taking the Asprin after the bleeding episode yesterday so am none the wiser for this little experiment.

However the burning nerve pain has now intensified in my feet, legs and arms to the point where it's pretty much unbearable so I've gone up a dose on Cymbalta again and so ten days on am back to where I started - feet and legs on fire with pain and arms not much better.

Is this it I wonder? A case of forever treating only the symptoms of the small fiber neuropathy rather than addressing the cause - in my case confirmed autoimmunity? When I took immune suppressant drugs for RA the neuropathic pain all but disappeared. But unless the RA comes back in the form of synovial swelling I'm told I won't qualify for anything other than symptomatic treatments such as Cymbalta.

Anyone else in this position?

Sorry to hear you're suffering so badly.

What's the nature of your autoimmune diagnosis?

When you say you no longer qualify for immune suppressant drugs, is that due to financial treatment protocol, or because the drugs have other medical risks?

Hi Mat,
I also have RA and SFN. The SFN was diagnosed before the RA,

I have been on Methatrexate ( also due to treating a combination of vasculitis and RA), and I am now on Leflunamide to treat the RA, and on Amitriptyline and Lyrica to treat the awful symptoms of SFN.

My symptoms of RA are flaring, sometimes over periods of weeks, and then goes away for periods of weeks, but it is still VERY active. ( having a flare now)

The symptoms of SFN is more constant, but do flare. Symptoms include "burning feeling, like acid/salt, mostly all over, all 4 extremities, torso and including face mouth and gums.

Regarding the treatment with IVIG, I would think it would qualify as treatment for you due to positive Spinal Tap? Perhaps when you also have had the Skin Bx for evaluation of SFN that would help to qualify you ( if it is positive.) But also bear in mind, sometimes the skin bx might turn out negative. I think, at least here in US, the ratio of accuracy is about 89 %, if I am not wrong.

I was worked up for treatment with Rituxan, which has here been approved for treatment of RA, and it is said to have an excellent side benefit to also treat SFN.
It turned out after my VectraDA test, that my RA disease was active but in a mild disease activity.

I can so easily understand your frustration regarding diagnosis and treatment!!!
I have a question to you: What kind of adverse effect did you experience from Amitriptyline?

I wish you all the best.

Thanks for your response Synnove. I can't write much because I have the most terrible headache presentky but just wanted to say it's very good to have someone who has RA and SFN to speak to.

I took Amitriptyline for over three years but stopped when I realised it was the cause of severe heart palpitations and dizziness. Mat x

In the UK NHS consultants measure an RA sufferer's DAS28 for their active disease but also you have to have tried and failed two DMARDs including Methotrexate to meet the criteria for Biologic drugs. I've tried 3 now so qualify on this front but I have no joint pain or swelling presently so don't qualify for more RA drugs. Hope this explains.

The aspirin takes a good 5 days to get out of your system...so this may be why you are still suffering the stomach pain. Not to mention, you obviously irritated the lining of your stomach from the aspirin...to the point of bleeding...this is actually quite concerning and should be followed up. If you continue to see blood (or black stools) then you need to get to an ER for assessment.

Thanks En Bloc. I phoned the out of hours doctor last night. He asked me to describe the bleeding and was satisfied that it was most probably because I had ingested a lot of blood when the nose bleed went down my nasal passage when I was sleeping on my back with my mouth guard in to stop my jaw crunching.

I know this sounds a bit bizarre but my mouth and nose were caked in blood when I woke (yuck - sorry!)

He did ask me to come into the hospital this morning to get a full blood count taken but our car was out of action and anyway I don't think I am anaemic. I get nose bleeds quite often from the dry sores that seem to form in the top of my nostrils. I don't have polyps so I think this is Sjogrens as part of my RA/ autoimmune disease. But the doctor confirmed that Asprin could cause or significantly worsen a nose bleed. Of course if I had more blood in my stools I'd go straight to A&E/ ER as the doctor also told me to.

Thanks for explaining that Asprin stays in the body for a while. That is useful to know and probably explains why the gnawing stomach continues - like being hungry and nauseous at same time. The emergency doctor said I should ask my GP to send me for an endoscopy. After the awful lumbar puncture of three weeks ago I find the thought of another unpleasant procedure a bit daunting but I'll get over it if this horrible tummy problem continues!

Yes, it does, thanks. I wasn't familiar with DAS28.

I believe it's a global scoring system Janieg but it is primarily used by the NHS because of the great expense of biologic drugs.

I'm interested to know how your idiopathic SFN is judged to be non progressive to date? I feel mine is progressing steadily because the tingling, burning, damp sensation has spread to above my knees and elbows from just affecting ankles and wrists over the past 18 months or so. But I'm not sure how this could be evidenced clinically and it didn't show up in my nerve conduction tests? Do you need regular skin biopsies to assess whether or not it is actually progressing?

The assessment of "no progression" is my own based on symptoms. If anything, I've improved from a year ago. Even though I ebb and flow, I no longer have the horrible searing nerve pain I did about a year ago. I also think the severity of my other symptoms (burning, tingling, odd sensations) have lessened. I'm also no longer kept up all night by symptoms, although I do still have some off nights. I know to some extent I've learned to be comfortable in my discomfort, but I do think I've actually improved.

I started taking R-Lipoic Acid last summer, and I have to believe that at least took some of the edge off. I'm not taking any meds to help with the discomfort right now, although I was taking gabapentin for awhile. I'm not sure it helped.

My neurologist opted not to do a biopsy as I'd taken a jillion other tests up to the point of the SFN diagnosis. He said he could do the biopsy, but all it would do is confirm the diagnosis which he was sure of (and so am I).

<edit>

I should add something which may or may not be of significance to all this.

I did one other thing that could be contributing to improvement: I drastically changed my diet back in September by going on a low carb diet. Despite having normal diabetes screening values, I've learned I do indeed have glucose issues that I can see by self-monitoring. Since supposedly 50% of all SFN sufferers are diabetic or pre-diabetic, I decided to treat myself like a diabetic, and will continue to do so. If high glucose are responsible or partly responsible for my SFN, my dietary changes may be helping.

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. :confused:

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. :rolleyes: