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.
Today, four years later, I take 5mg of Prednisone daily and 750mg Cellcept daily. If I flare, then I would go up to a higher dose of Prednisone depending on the intensity of the flare. I would never decide on my own how much to raise the Prednisone. The doctor determines steroid dosage amount based on the intensity of the flare, also issues like the operational status/health of my liver & kidneys when considering dosage amounts.
Our medications are serious medications that require doctor supervision. I make an appointment ASAP when flaring to go in for blood work immediately. Flares involve the liver & kidneys so it is very important that correct and careful doctor supervision is involved.
In blood work, a DM flare will often include a rise in liver enzymes of ALT, AST, aldolace, and other scores might rise too. CPK does not always rise in a DM flare for all patients. At the beginning of DM, CPK is usually a rise for most of us and that will be above normal range or very high like in my case. There are some patients like with PM that do not always have a CPK that will return to normal range for a long time. DM often does return to normal CPK ranges. My CPK went high in my first flare. My flares today would usually just be screaming liver enzymes of ALT, AST, aldolace, increased sed rate, etc.. but usually not a CPK rise. In a flare, I will feel big weakness in both arms & legs. My legs will feel like bags of cement when walking across the room. My chest is heavy during a flare too.
Do see the doctor if you suspect a flare. You could discuss with the doctor your best procedures that are right for you in case of flare. Best Wishes.
Remember that high doses of steroid causes high blood sugar. I watch my blood sugars and I had to eat a lot of leafy green veggies for a while until I was able to taper much lower. I avoid any starches like corn, spaghetti, breads, candy etc.. on high prednisone. Do discuss diet with the doctor for high Prednisone.
Our bodies are all different and some people will increase the steroid to 15mg for three days. I only increase to 8mg and that usually does the job for me. I hope you will get your flare procedures worked out well very soon. Keep us posted.
Best Wishes.
I came back from the Doctor's appointment and he sent me to an EMG test, and said to increase the prednisone's dosage.
I also wrote about it in a new discussion.