Leflunomide and peripheral neuropathy: I believe... - PMRGCAuk

PMRGCAuk

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Leflunomide and peripheral neuropathy

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I believe my peripheral neuropathy may be caused by leflunomide. The bumf in the packet says it is a common side effect. Neither the rheumatologist, the neurologist or the pharmacist think it is the cause, and I can't see anything in NICE guidelines. I think there was some research in the early 20s in Australia and USA to that effect, but why does it seem to be unknown to specialists in UK?I have pain in hands, dead feeling on backs and in 4th and 5th fingers and have difficulty in writing, food prep, and can't play piano.

Neurologist has taken blood sample and ordered an electrical conductivity test.

I would like to know if it's reversible (Rheumi has agreed to me stopping leflunomide for 6 weeks for other reasons), and if not, whether anything can be done to restore normal function.

Any ideas?

What with this and the diarrhoea as well as the tiredness and limited energy I'm not a happy bunny just now.

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PMRproAmbassador

Depends on the doctor - Lorna Neill's recognised it.

healthunlocked.com/pmrgcauk...

As you can see from the story, she reduced the dose and it is acceptable.

I wouldn't accept the duo of diarrhoea and neuropathy - they are worse than the effects I could attribute to my 14 years of pred. most of it at above 10mg pred and a fair bit at 15mg and higher. I say "could" - I'd have to try hard to identify any that bothered me!

PMRrunner profile image
PMRrunner

I took Leflunomide for over two years and stopped because of peripheral neuropathy in both feet and diarrhoea. The diarrhoea stopped almost immediately and the peripheral neuropathy gradually improved over the next 18 months

papadapadoo profile image
papadapadoo

Shortly after I started taking low-dose naltrexone my peripheral neuropathy disappeared and it hasn't returned. So far, though, the LDN doesn't seem to have affected my PMR.

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