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nxp2 positive dermatomyositis

Posted by campergirl @campergirl, Apr 15, 2025

Been having issues for approx 4 years. Got really bad in July of 2023 after a 2nd bout of pneumonia. Finally diagnosed with nxp2 positive dermatomyositis in July of 2024. On prednisone and imuran. Have isd. had tachacardia. Got sepsis in Oct 2024 and came out of that with afib. Just seem to keep going downhill. Has anyone found anything that actually helps?

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scomer | @scomer | Mar 22 2:46pm

I’m so sorry you have been so ill. I just joined as last month I was diagnosed with NXP-2 and Jo 1.

On hydroxychloroquine, prednisone and methotrexate. Even with treatment, last labs ESR was at 130 .

Had heart tests but no tests on lungs, or anything else.

I hope you are getting some kind of relief. Hang in there!

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