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@leoniesnorton

Hi there, I was diagnosed with EGPA in 2016. I was put on the same chemo as you for several weeks and 1000mg of prednisone IV for 2 days when the PN (Peripheral Neuropathy) started moving up my body. The high dose of pred stopped it after 2 days and I now have PN in my right leg, left foot & calf and my left hand except for my pinky finger! I have been on Methotrexate tablets since then and basically am in what they call a chemical remission. There are other newer drugs for EGPA such as Nucala, Rituximab & others that seem to work well for others. I use some natural health supplements which helped with the neuropathy, especially the sharp pains in the feet that was like walking on glass. Following is a page that gives you list of supplement that you can try. https://www.medicalnewstoday.com/articles/326917

I used a wheel chair for a few months then a walker and then a four pronged walking stick which I still use especially in really bad weather when the air pressure drop drastically and it affects my numb feet badly. I found that magnesium works well at night an hour before bedtime as my feet still spasm and my calves cramp. I have a very small electric blanket just for my feet and calves and have that on during the winter to help my feet keep warm. I still wear two pairs of socks during the day so I had to buy a size up in shoes.
I also went to mobility therapy when I was able to drive, I was using a walking stick at the time but was walking fantastically after a couple of months, once a week. It has been a long slog but I am driving and walking well now, although not long distances & I have a disability card for my car. I am still taking some supps and methotrexate and I still have the PN. I wish you well in your recovery/remission. Do not hesitate to get in touch should you have any questions/support. Facebook Groups are also good to join for EGPA support.

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Replies to "Hi there, I was diagnosed with EGPA in 2016. I was put on the same chemo..."

That you so much for sharing your experience. This is so new to me. I really appreciate that you would take the time to share. I live in NS , Canada and was fortunate to have good Rheumatologists in Halifax. I hope you continue in remission as I hope to get there one day. Take care.