Peripheral Neuropathy

[Jackie29]

Long before I was diagnosed with MPA I had very painful feet and toes. I also experience pins and needles sentations. Since being on meds for the last 2.5 years the pain had been greatly reduced. I am currently being weaned off Cellcept and steroids and the pain in my feet has returned alongside very itchy eyebrows! I am being sent for nerve tests but apparently these are both signs of Peripheral Neuropathy common amongst MPA patients. Anyone else experiencing this?

[Hidden]

I've suffered nerve damage to a number of peripheral regions but no-one has been able to confirm whether it is as a result of my Wegener's or from prolonged use of steroids. As the disease is now quiet and I have been off prednisolone for over a year it would appear the reuslant damage is permanent as there has been no recovery in the areas since.

Healthy wishes.

Martin

[Galaxy2]

Hi Jackie

I am taking steroids and now cellcept because of the pain/numbness/pins and needles I started experiencing in my arms and legs. Soon after starting the steroids though the tingling feelings started in my face and hands and at times the pain in my hands and fingers is severe. and i also get times when my fingers shake and I have no control over them There seems to be a difference of opinion as to what the cause of this is. No conclusion has been reached but I have been wondering whether the steroids have added to my symptoms and Martin's answer is interesting on that front. As fantastic as all these drugs are their side affects can lead to more confusion and I think in my case may well be mimicking the original symptoms I had.

All the best

Jenny

[John_Mills Volunteer]

Jackie, painful or hot & burning feet and toes are something that many vasculitis patients complain about but nobody seems to recognise. You won't find mention in textbooks and one of the top vasculitis consultants told me that it is not characteristic of vasculitis - so there!! Certainly, small vessel vasculitis like WG & MPA can cause damage or destruction of nerves. In sensory nerves this can result in loss of sensation or numbness where the nerve has been destroyed OR it can cause phantom pain where the nerve has been damaged - maybe permanently. With motor nerves, it can result in muscle weakness. Nerves can regrow and repair themselves, but very slowly.

Steroids are like love - they can build you up and bring you crashing down.

Sometimes they are a life-saver. Sometimes the effect of steroids can be worse than the disease, which is why the search for non-steroid treatment goes on.

Itchy eyebrows - nothing in the textbooks about those!!

[Jackie29]

Thank you for your help and answers. I was given this link journals.lww.com/co-neurolo...

to an article which explains a link between vasculitis and peripheral neuropathy. My Vasculitis Consultant has no doubt that there is a connection and that the itchiness I feel in my eyebrows is a very common 'next' stage after hands and feet. I am due to have tests to examine the full extent.

[Jackie29]

I forgot to mention that I have MPA and a fellow patient found this article which clearly states that peripheral neuropathy is the most common form or neurological in patients with MPA.

orpha.net/data/patho/GB/uk-...

Don't mean to bombard people just I think it is really important that our consultants recognise all that may happen to us.

[Kentish_Man]

I have PAN also diabetes. As a result I often get severe itching all over. I am not on Lyrica and this has helped to a degree to reduce the itching. But get numbness in my feet, hands and legs. Right now my feet, although warm to touch, feel like blocks of ice. I have tried thick socks and also putting my feet on a hot water bottle to help with the circulation.

[Wellsie]

I have recently been diagnosed with PAN. If it helps i can share my own peripheral nerve experiences:

My first symptom diagnosed was a failing ulnar nerve in the my left arm. I lost sensory and motor nerve function in a matter of weeks. I was referred by my GP to an orthopaedic surgeon, who ran NVC and EMG tests and confirmed a conduction block on or near the elbow. Told me I must have leant very hard on it. The nerve was decompressed and an anterior relocation of the nerve performed to move the nerve. 2 months later the same elbow was operated on as a result of a severe post-op infection making it's way into the bursar. 4 months later I was back at the Orthopaedic surgeon with a failing radial nerve and wrist drop in the same arm. This time I was told i must have draped it over the back of a chair. Once more EMG and NVCs were performed and a conduction block found. Surgery was scheduled again. In the intervening period I developed severe paid in all of left arm, high grade fever and sickness and was admitted to local neuro ward for 3 weeks, being treated with opoids to provide breakthrough pain relief. A third unnecessary surgery was luckily cancelled.

Whilst on the neuro ward, my other arm's ulnar nerve failed completely in just 2 days. I lost all feeling on the Saturday and all movement on the Sunday. That started the chain of events that has eventually (via 2 more hospitals, 4 consultants and 6 further NVC and EMG tests over the course of 12 months) lead to my diagnosis of a systemic vasultis condition, confirmed by my neuro and rheumo consultants as PAN as latter developing symptoms included ulceration of hands and feet and livedo reticulo. My blood tests also have high WBC, ESR and C-RPs and I am ANCA negative. I suffer from hypertension, and kidney function bloods are *just* the right side of the test line, but have been nudging up with my blood pressure, which is now controlled by ACE and calcium channel blockers. I guess like everyone else I get the pain, tiredness, mental apathy and lower limb swelling, as well as daily fever and night sweats.

To date I have lost the ulnar nerve function of both arms, the radial nerve function of my left arm, the sural nerve function of my right leg through sural nerve biopsy and I have bi-lateral peroneal nerve involvement. All my nerve damage has been both sensory and motor, with significant axonal loss and I have been told I will never recover the lost motor and sensory function in my arms or biopsied sural nerve. The sural nerve biopsy proved inconclusive other than to confirm significant axonal degerenration. This peripheral nerve damage was all caused by the vasculitis and predated treatment with prenisolone.

Presumably you've had susbsequent EMG and NVC tests Martin to identify conduction velocity and amplitudes and whether any blocks exist? Did you get your tests done for eyebrow itching Jackie?