EGPA / Neuropathy?: I have a potential... - Vasculitis UK

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EGPA / Neuropathy?

Greytippy7 profile image
4 Replies

I have a potential diagnosis of egpa, but only symptom has been lung infiltrates, now on 5mg pred and was doing ok, only suddenly got tingling in hands and feet and a feeling of cramp in my arm muscles - worried this is neuropathy, but could just be side effects steriods - any ideas? Had bloods done and was told the readings were normal for someone on steriods, inflammatory markers not raised and anca is low.

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Greytippy7 profile image
Greytippy7
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4 Replies

It's quite easy to drive yourself a bit mad. Even when or if you get a diagnosis, symptoms can come and go and vary alot. I have PAN and my immune system just seems to chase an invisible bug round my body creating a trail of symptoms. From my limited knowledge and experience a 5mg dose will not create those symptoms you refer to above. 5mg is pretty low.

PMRpro profile image
PMRpro

On the PMRGCA forum, pred and cramp usually engenders a suggestion of trying magnesium supplements/Epsom salts footbaths: pred increases loss of magnesium through the kidneys and muscles get upset. Checking blood levels doesn't help - it is robbed from muscles to keep the blood levels up. Another sign of low magnesium is tingling in the extremities because magnesium is important in nerve function.

It is a standard first approach in mainland Europe - depending on the form of the supplement, careful how much you take at one go as it has a laxative effect!

cairneyh1 profile image
cairneyh1

Hi Greytippy.

I was diagnosed with EGPA about two and a half years ago and I am in remission. When first diagnosed I was on 1000mg of prednisone for a few days. When I left hospital 5 weeks later I was on 100mg. I have reduced gradually to 5 mg and have been on that for about 9 months. ( my adrenal gland does not produce the natural steroid any more). I have had cramps in my hands, arms and lower legs all of that time but they have decreased in frequency and intensity. I don’t know if it is caused by the illness or the prednisone but it is far better than and a small price to pay compared to what I was suffering at that time. Hopefully your symptoms do not get any worse and you are able to live a reasonably healthy life.

Harry

Cherishe77 profile image
Cherishe77

I am diagnosed with possible EGPA (non anca) and possible small vessel neuropathy. I don’t take prednison but co-trimaxazol 960 (trial) so from my experiences you can have (possible) egpa and neuropathy. They often go together. Try peaplex for your nerves and see if it helps. If it does the pain wasn’t from the pred.

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