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I have been diagnosed with EGPA since last May.
I am currently holding on to remission using Methotrexate once a week. I have a question about peripheral neuropathy. It has been nine months and I have pronounced numbness in both feet and noticeable numbness in my right hand. I am wondering if anyone has had similar experiences and what they did about it.
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I have been on Nucala successfully for two years now for EGPA. The neuropathy in my feet and ankle has gone away although I notice I seem to have more tiny blood vessels showing in the foot which was most numb. Has your doctor looked into the biologic Nucala for you? It is three shots (one in each thigh snd one in the belly and not painful) every 31 days to pass Medicare requirements and done at an infusion clinic. My rheumatologist set it up for me and it is working very well. It shuts off the eosinophils overgrowth and stops the damage to your organs. I have not had side effects and have been able to get on with living. Do look onto this drug. While some people are not able to take it due to reactions in their bodies, I was lucky to not have any of those side effects.
Good luck on your EGPA journey. You are not alone.
May God bless you with healing.
MTH13
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2 ReactionsThank you for your response and information. My eosinophil count is normal and has been since the initial treatment with prednisone and cyclophosphamide and now methotrexate alone. The nerves are growing back slowly but the damage leading to the peripheral neuropathy is frustrating and disheartening. I guess since the disease is so rare I have few resource stories from people with the same disease. I will ask my rheumatologist again about options. God bless you too.
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1 ReactionSorry you are going through this. I feel your pain. I have peripheral neuropathy among other symptoms of EGPA. This was the sudden onset with my disease (2019). My rheumatologist suggested 5 rounds of Cytoxan (chemo). It helped me feeling again. Not 100% but enough where my foot doesn’t roll or bump into things without feeling. I can feel pain; my hands work for the most part. Before I was unable to dress myself, make meals, write, etc. My hands did not work. Now I can pick up small items, button clothes, prepare meals (using knives), apply makeup and so much more. Cytoxan worked. Also, had I known earlier that Physical Therapy would help I would’ve done so. Do this as soon as possible. Take magnesium and R-Lipoic Acid as these help with neuropathy. Wishing you good health.
Thank you for sharing your voyage through EGPA . I hope and pray for your continued life in the here and now. That’s all we have and I wish you moments of joy in your life going forward.
Paul Gilbert