Polymyositis & Dermatomyositis Support Group

Polymyositis (PM) is a type of chronic inflammation of the muscles (inflammatory myopathy) related to dermatomyositis and inclusion body myositis. The inflammation is predominantly of the endomysium in polymyositis, whereas dermatomyositis is characterized by primarily perimysial inflammation.

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Muscles & Bones
/ Polymyositis & Dermatomyositis Support Group

Cyclophosphamide

kendrac26
kendrac26
My mom is gonna be recieving her first Cyclophosphamide infusion this week at Mayo. I'm a little nervous of what to expect. The side effects sound like they really suck, but if it works I think it would be worth it. Has anyone tried this for treatment? What was your experience like? Prayers would be much appreciated. Let's hope this works and she doesn't get too sick from it. Thanks much!!
nanny1611
nanny1611
No, I've never tried that treatment, because prednisone worked so well for me. But I wanted you to know that I would pray for your mom. Please let us know how things go for your mom.
lexisgirl
lexisgirl
I've not tried it before either. I know Cytoxan is a chemotherapy drug and used for some auto-immune disorders such as Lupus. I have a friend that takes it. It doesn't seem to bother her at all.

I wonder why they decided that over Rituxan or IVIG which is more proven to work for Myositis. Regardless, I hope it really helps her feel better.
trpt1
trpt1
Hi Kendrac26, If I remember correctly, your mom was diagnosed with ILD. The cyclophosphamide will assist her lungs. Methotrexate has been known to cause some lung damage. The medication can only slow down the progression of the illness, and it is not a cure. I would ask the doctor how to keep your mother comfortable. You also need to know how the disease progresses so you know what symptoms to expect. She will have moments of gasping for air or issues that may scare you unless you are prepared to know what to expect. My dad (RIP) had diabetes. Dad would have very low blood sugars (It was common for him to have a 35 blood sugar several times a week.) I would never panic because I knew what to expect. Ask the doctor how to handle situations and do not panic. You will help your mother if you can be reassuring when she experiences issues. Keep us posted and good luck.