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.