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Anyone else with Churg-Strauss or EPGA?

Autoimmune Diseases | Last Active: 9 hours ago | Replies (40)

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@roxy1954

That sounds painful. I have not had that happen to me. I have had some rashes on my legs after shaving which is part of the vasculitis issues. They didn't hurt just looked awful. I have not had any adverse effects from the medication. Fatigue maybe. Its purpose to reduce my eosinophils has been successful. I know there are some other medications like Fasenra that might be better if you are having a reaction. Could there be another disease of the nerves? What are they doing to reduce your eosinophils?

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Replies to "That sounds painful. I have not had that happen to me. I have had some rashes..."

I have had numerous blood draws since October when a blood test sinched the diagnosis of Churg Straus. My arthritis doctor has been the primary in diagnosis and has been suspecting my condition for a couple of years now. In Oct he had all the data from that blood test to move forward, so he started me on Nucala and insisted on my getting a Shingles shot as well.
Looking back these last few years my body started with asthema, then later I was diagnosed with PMR and was treated with prednisone for 18 months. It worked well but with bad consequences. I now have bad bones, high blood presure, and I put on 40 lbs. I stopped taking prednisone and was able to lose the weight. In 2017 I woke up one morning with my feet numb and tingling and was told I had neuropathy. I also had my kidneys checked and have moderate kidney disease. I blame it on the prolonged use of Ibuprofen for my migraines.
My arthritis doctor is retiring and I have requested a referral to UCSF at a vasculitis clinic. So My eosinophils situation will be more clear. I also have had sinus surgey so it all points to one thing EPGA. Its been a long journey but I hope to find more about what is going on. My ENT has requested an antibodies test and proposed a treatment of upping my antibodies if needed. So thats my story.

Try an electric shaver for women instead of a razor. Much gentler on the legs and may solve that problem for you as it did me!