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Anyone else with Churg-Strauss or EPGA?
Autoimmune Diseases | Last Active: 5 days ago | Replies (28)Comment receiving replies
Thank you John. I do have a care team and have just finished 6 mo of Nucala which has helped a lot and kept me off of Prednisone. They are continuing on for another 6 mo. since it seems to be working on my breathing. They admit that they just don't know alot about Churg Straus and we are figuring it out together. There are many other things that pop up at different times with my body and so I thought I would check with others to see if I can learn anything on my own. I am due for more blood work and maybe CT or XRAYS to check progress there.
Replies to "Thank you John. I do have a care team and have just finished 6 mo of..."
Hi Roxy, i too have been diagnosed with Churg Straus and am on the Nucala regiment as well. It has helped lower my EOS numbers and my breathing treatments have been good lately. Having more blood work and a CT scan this month. I have also been told there is not a lot of information on this. I too, have things that pop up and always wondering if it is part of the CS or something else I should be checking. It is frustrating. I am just going on the thought that as long as my blood work is good and I can breathe, it is a good thing.
I have Churg Straus also and was put on Nucala as well. However within 12 hours of taking Nucala my lower legs broke out into small and medium lumps that were all very painful and some turned into open sores while others truned into large painful red rashes. There were so many I couldn't count. My arthritis doctor was stumped as to what or why I got these lumps. I was on Nucala for 3 months when we decided to take me off of it. I think my breathing did improve during that time but the pain from the lumps has disrupted my life so much that It wasn't working. I canot sleep because just having a blanket or sheet resting on my legs was painful. I describe the lumps as small volcanos of nerves.
I'm wondering if anyone else has these lumps/lesions/sores?
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Have you ever used Google Scholar (https://scholar.google.com/) to find medical research information? What's nice about it is the sort by year function for the search results to get the latest research information on treatments being used. I did a search for EGPA and it came up with a good sized list:
https://scholar.google.com/scholar?as_vis=1&q=egpa+treatment&hl=en&as_sdt=1,24&as_ylo=2020