Peripheral Neuropathy

[Fj65]

I’ve been having symptoms of peripheral neuropathy and just starting the process of tests for this. I’ve had RA for about 13 years and I’m pretty stable on methotrexate and Benepali. Does anyone else experience neuropathy symptoms? Just wondering if it’s common in RA?

[Matilda7]

I do, have been having increasingly more problems since 2005. What symptoms do you have and what tests are they doing?

[SueB]

I've had RA since 2009 and am lucky enough to have been in remission since 2014. However I have had strange sensations in my lower legs which were thought to be peripheral neuropathy although the scan showed me to still be in normal range. The doctor I saw told me to take vit B complex which I have done ever since. It took a while but mostly that strange glowing feeling is gone now, just feel it on the odd occasion if I'm on my feet too much. It might be worth a try. Sue

[Fj65 in reply to SueB]

Thanks SueB I forgot that I have recently had a booster 5 injections of B12 which don’t seem to have made much difference and I’m also started on vitamin D3 but only a few days in. Have lots of problems with tinnitus and sensitivity to artificial light

[Neonkittie17]

Hi, I've had some of these symptoms in fingers and toes a few years back but that was when when my RA wasn't controlled and I was between changing meds. Good luck and hope that they can offer solutions to alleviate this for you.

[nomoreheels]

I've had RD 9 years & have peripheral neuropathy, or rather axonal sensory polyneuropathy. Once fasting bloods were taken for diabetes & confirmed it wasn't as a result of that I was referred to Neurology who performed nerve conduction studies earlier this year. It also confirmed carpal tunnel, both left & right for which my Occupational Therapist gave me exercises & my OT Physio provided splints. I'm down to have another nerve conduction study in 6-12 months, unless symptoms increase when I'll be seen earlier (yep, that's what was said, we'll see.) I have history of left median nerve entrapment, operated on successfully in 2013. My OT did say that in Poeple with no inflammatory disease it's more often than not completely successful with no recurrence but in people with RD & associated diseases who have "inflammation running through their body" it's unfortunately more likely to be happen again & be severe enough to need further operations.

As to how common peripheral neuropathy is, well some do have it, after all it is related to inflammation & the nervous system, it's usually bilateral as well. I have wondered & did ask the Neurologist if it could be related to leflunomide, a known possible cause although rare, his response was "possibly", very helpful. I see the Registrar next so I shall ask her opinion, if she's unsure I shall queston if I should stop taking LEF for a trial period to see.

I hope you're not in too much discomfort & your test appointment isn't long in coming. Hope some of this helps. Maybe this will be of interest the-rheumatologist.org/arti...

[Fj65 in reply to nomoreheels]

Thanks for this the article looks interesting. I’ve had diabetes tests as well. I’m not familiar with leflunomide . My symptoms are bilateral but worse at the moment in one toe

[Hidden in reply to Fj65]

I don't know if this is relevant at all to you but I was misdiagnosed with RA 6 years ago. My neuropathic symptoms started a few years earlier but I ignored them. They resolved briefly on higher dose of MTX with Hydroxy but when I had to drop doses for other reasons it came back with a vengeance all the way up my legs and arms as pins and needles with a lot of deep pain. As my markers were high it was assumed to be increase in RA activity but I had no swollen joints and couldn't tolerate any DMARDs well so was taken off in case MTX or Hydroxy were responsible. RA was found to be non-esrosive. My face got involved too with burning lips and gums and numb tingle everywhere. Baffled all my doctors including neurologist. MS was tested for but, although stuff showed up it wasn't specifically for MS.

Anyway I was finally put on Prednisolone and it improved but I relocated and finally my ANA was clear positive and high IgG and IgA a rheum had me tested by lip biopsy for Sjögren's and it came 100% for this. New rheum said it was the small fibre neuropathy that was the red flag.

I've done lots of research and people with secondary Sjögren's are just as likely to have same issues as primary. Mine is thought to be a stand alone disease now but my bloods point to other rheumatic diseases so they keep me under close scrutiny in the connective tissue clinic.

If you have Sjögren's as well as RA it could be the culprit. The very experienced rheumy did say that usually small fibre neuropathy only occurs with RA (if there is no sign of Sjögren's or Lupus) if longstanding disease is very erosive and seropositive. Small fibre neuropathy of rheumatic disease can be length dependent glove and stocking distribution although - of face affected it can also be non length dependent sometimes. Nerve conduction studies usually show up entirely normal as mine did - but brain MRI and lumbar puncture showed enough to confirm it was inflammatory neuropathy of the tiny nerve fibres all around my body - common with Sjögren's because of the high inflammation from concentrated blood. All due to parasympathetic nervous system responding to lack of tears.

Here's a link in case you or others here have Sjögren's: hopkinssjogrens.org/disease...

[Fj65 in reply to Hidden]

Thanks for this lots to research. Are you in the USA? Seems much more tests done there than the Uk

[Hidden in reply to Fj65]

No I'm in Scotland but the link I've given is pretty much the information that BSR guidelines follow - the John Hopkins lead the way with Sjögren's - UK fall sadly behind by a long way for this disease.

If I'd been a John Hopkins patient I'd have been properly diagnosed a few years earlier and have been offered IViG - which may well have prevented the damage to my peripheral and autonomic nervous systems from occurring. I'm now on the maximum dose of Mycophenolate - but it can't reverse existing damage so they keep explaining - meaning that numbness and temperature disregulation and facial neuropathy are all permanent.

Here are a couple more very recent links from the BSR. I suggest you ignore the references to primary SS because, the leading experts now think there's no difference and it's whether you have seronegative or positive Sjögren's that influences what kind of systemic involvement occurs.

academic.oup.com/rheumatolo...

academic.oup.com/rheumatolo...

[Hidden in reply to Hidden]

Ps plus much easier to assess if Sjögren's is a stand alone disease than if it's co-existing with another rheumatic disease. Primary just means first.

[Matilda_1922]

Hi

Can you describe your symptoms. I know everyone may slightly different but will be generally the same.

I'm not sure if I am showing signs of periferal neuropathy.

Thank you in advance x

[jane1976]

Hi, I've had peripheral neuropathy for over a year, each time I've seen a RA specialist I've mentioned it to be either ignored or told to see my GP? I was classed as having type 2 diabetes which I understand can cause peripheral neuropathy but for last 18 months my Hba1c has been 39 (I think below about 50 a person is classed as being "normal") my GP said that's better than hers!

So still haven't got any sense from anybody?