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Anyone else with Churg-Strauss or EPGA?

Autoimmune Diseases | Last Active: 5 hours ago | Replies (40)

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@becsbuddy

@jonifranklin I had 8 doses of cyclophosphamide when the prednisone wasn’t working. I had tried adding mycophenelate with the prednisone but nothing was working. My main reaction to the drug was just 1-2 hours after when we tried to have dinner. I ate a bit of spagetti, said I had to go to the bathroom because I felt funny and then started screaming because it felt like someone was stabbing me! Turned out that none of the nurses had told me NOT to eat anything with spicey tomato sauce because of a bad reaction!! So, now you know to avoid any spicey tomato sauce meals!! Fair warning in case they forget to tell you! No other side effects!

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Replies to "@jonifranklin I had 8 doses of cyclophosphamide when the prednisone wasn’t working. I had tried adding..."

Wow that’s interesting! I’m mostly worried about hair loss as I’m a breast cancer survivor and I’m dreading going through that again and also mouth ulcers ?