Peripheral neuropathy

Hi, any one suffers from this condition? If so what’s your treatment?

Thank you 😊

[Hidden]

Unfortunately there isn’t much treatment that I’ve found to be effective. The best was Amitriptyline but this worsened my dry eyes (I have Sjögren’s) and caused me palpitations so I had to quit after 3 years on it. All the others eg Gabapentin, Duloxetine - have made me too dizzy and affected my mood.

Ultimately there is no treatment that slows down the process of nerve destruction, apart from IViG, which is so expensive and scarce as a resource that it’s only used on the very most extreme forms of inflammatory neuropathy. Otherwise it is hoped that, by treating the underlying condition eg Lupus, the peripheral neuropathy will also be managed.

[misty14]

Hi Maria

My treatment for peripheral neuropathy is steroids. Found good benefit from them as its a tricky condition. Sorry you have it too and hope you get help for it soonX

[johare]

Hi I have to agree with whats been said before. I have also tried Amitriptyline, but it made my Sjogren dry eye worse. Gabapentin is ok. Low does steroids if it gets that bad.

I posted yesterday, that there was a small piece on BBC1"Holding back the years" programme, on peripheral neuropathy. It didn't give a cure but did explain the basic reasons.

[Melba1]

I find steroids work quite quickly but I seem to get this as part of a lupus attack sometimes.

My worry was that if it continued too long the damage would be permanent but mine hasn’t yet and I make a full recovery between attacks. The longest I’ve had it permanently for is about 4 months but I know some people have a more chronic version.

[BellaC79]

Hi Maria68

I have had peripheral neuropathy for the past 6 years. Thankfully it hasn't worsened but I take pregabalin (lyrica) which I do find works for me. It does make me a little sluggish but I can deal with that other than the pain. I suffered really badly with my feet in particular.

[TraceyZzzz]

I had this very badly at the start but doctor found that my B12 levels were very low. I was given B12 booster injections and then a maintenance injection every 2-3 months. I haven't had the PN since and the B12 has made a huge difference to fatigue and other symptoms.

[Jeast]

I inject b12 (methyl) twice a day. If I miss one, the numbness and tingling come back. Been doing this about a year now. Was hoping that catching it early, there would be neurological healing, but my hands are still bad. My feet are definitely better.

[MVJohn62]

I take Triptomer along with Pregator

[MsAndyIvy]

Just been told I probably have this but given no treatment as yet as they want to review all bloods first and do small nerve tests. Two month wait for that and they don’t do it private anywhere either.

Neuro told me it wasn’t a Lupus symptom it obviously is for some.

Thanks everyone for posting about meds, really useful.

Hope you are all not too tingly.

X

Ps are may stiletto days over?