Peripheral neuropathy: Is peripheral neuropathy an... - NRAS

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Peripheral neuropathy

beaton profile image
11 Replies

Is peripheral neuropathy an arthritis symptom?

I was diagnosed with Psoriatic arthritis some years ago but because I couldn't tolerate the methotrexate type meds. my rheumy dismissed me.

Some years on now my GP was perplexed by my symptoms,pins and needles and numbness in my feet.

I happened to see my rheumy at a meeting last week,he diagnosed Peripheral neuropathy and suggested Duloxetine.

Has anyone any views on this,I'd like to become more informed before I see my GP.

Thank you.x

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beaton profile image
beaton
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Beverley-NRAS profile image
Beverley-NRAS

Hi beaton,

it is known that conditions caused by overactivity of the immune system can be a cause of peripheral neuropathy. I have put links below to the article on the NHS website about this that you may find useful:

nhs.uk/conditions/periphera...

nhs.uk/Conditions/Periphera...

Hope this helps,

Beverley (NRAS Helpline)

beaton profile image
beaton in reply to Beverley-NRAS

Thank you.x

Yes - peripheral neuropathy has been the bane of my life for about 18 months. Mine is in both feet and legs and both hands and arms now.

I see a neurologist for the first time a week tomorrow.

At first my rheumy (whom I also met at a meeting last week!) switched me from pills to injectable MTX because of this and side effects (liver) about two years ago. Then my gps took me off MTX when it came back because they thought it was probably a side effect of the drug. Then it got worse and after steroids and two other DMARDs (which I failed to tolerate) I came off MTX for a 3rd time with my rheumy's blessing 5 months ago. I think he sort of gave up on me at that point too looking back.

He has never really committed himself to what could be causing this problem and it is excruciatingly painful at times. I have tried Amitriptyline and Gaberpentin so far - Gaberpentin gave me a facial palsy and severe dizziness so I stopped after 3 weeks. Next up is Duloxitine but I'm waiting to see the neurologist first to see what he says. I am currently off Amitiptyline too because I want to know if it is contributing to dizziness/ drunken spaced out feeling I get from time to time. I was on it for 3 and a half years to quite good effect but at the end of the day I really want to only take drugs that might halt the disease process not mask or dull the symptoms, painful as they are. I did discuss Duloxitine with my GP and pharmacist and it's just a masking drug but if it works alongside other disease modifiers perhaps then I won't say no!

I hope this helps a little. The others I know with autoimmune diseases who have peripheral neuropathy seem to have Sjogrens or PsA or lupus or Vasculitis - or what we call a multi system autoimmunity.

I have been diagnosed with RA and Hypothyroidism but am fairly sure mine actually relates to sero negative Sjogrens or Lupus. I do believe I need my immune system suppressing again as MTX drove this horrible pain away. For a while I was also told it was probably Raynauds and treated for this at some stage but reacted adversely to this drug, Nifedipine, as well. I don't think it is Raynauds now and nor do my GPs.

Please feel free to PM me if you want to know more or if you learn more about PN or Duloxitine.

Warmest, Twitchy

beaton profile image
beaton in reply to

Thanks for your indepth reply, I will PM soon as I do want to understand more. You weren't at the Truro meeting were you? It seems such a coincident.

I've been on Amitriptyline,gabapentin,sulphasalazine and MTX,all made me spaced out and dizzy. Much to the frustration of my rheumy.Hence him dismissing me. He spent a lot of time looking at me at the meeting and when I approached him he did remember me. "Ah yes the awkward one."

Blimey how rude to call you "the awkward one"?! We've tried the same drugs it seems plus I've also tried Hydroxichloraquine and several others. None of the bad reactions have been the same though but my rheumy obviously thinks I'm awkward too. I think the skin reactions have been the most easy to deal with in that these have been all too visible and one of them hospitalised me so he can't really deny that it's my body that's awkward not me! It's horrible having drug reactions and horrible being dismissed so we do share a lot it seems but I live at the other end of the country and beyond to you down in Truro! I did go to art college down there and took my driving test three times in Truro - failed twice because of all those blasted little roundabout things! Speak soon. Tx

earthwitch profile image
earthwitch

There are loads more treatments for PsA than just MTX, and in fact MTX doesn't always work that well with spondyloarthritis (which PsA is). If you have failed MTX, and if you have tried or can't tolerate NSAIDs, then they should be at least considering antitnfs. I'd be wanting to make sure the inflammatory disease is totally under control and you have exhausted all those treatments before resorting to treatments that will just mask the peripheral neuropathy.

beaton profile image
beaton in reply to earthwitch

Thank you earthwith, I must admit I was bit taken aback when I was discharged but at the same time I know how sensitive I am to medications. So perhaps it's a case of the devil and the deep blue sea.

I don't think so Beaton - I think it's an admission of failure on your rheumy's part to dismiss you in this way. It isn't your fault you haven't been able to tolerate drugs so far and is possible that you may tolerate a Biologic drug, so as Earthwitch says, he should have kept trying.

beaton profile image
beaton in reply to

Yes,I shall discuss with my GP. There is also another meeting in Dec. so not all doors are closed.

Thanks everyone for your help.xx

I'm not sure about this of course as only we can know how much pain we are in ourselves - but from your description of the peripheral neuropathy you have experienced to date I would say that mine is perhaps progressing more rapidly than yours in the sense that it comes with mind blowing pain now and affects both my hands and arms too so I rarely get more than a few hours sleep at a stretch. But perhaps you are underplaying yours when you describe it as pins and needles and numbness or are more stoical than me?

It took me over a year to get a referral to a neurologist from my GPs while my rheumy remained seated and scratched his chin for 18 months or more in relation to these symptoms. I was told my my GP the other day that the nerve damage I have so far sustained is probably irreparable now and all that the neurologist will suggest is Duloxetine and then that's it although he did mention IViG infusions and Mycophenolate a few months ago too.

So I really would urge you to push your GPs or rheumy to refer you to a neurologist who can rule out other conditions and confirm the type of neuropathy you have and possibly even pin point the cause. I know that we are both very sensitive to drugs but there are hopefully some that we can perhaps tolerate if this is diagnosed soon enough. Tx

Banjo1963 profile image
Banjo1963

Had awful experience on no good for me out of body experience constipation dull feeling could only stay on it for 10 days if does no good for change to something else

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