Tuesday, September 20, 2011

Prednisone, inflammation and fatigue, oh my

I've been taking prednisone for the past 5 days or so. A good dose - down to 35 mgs now. My body was so inflamed and my current (alternative) treatment wasn't working. Since I have lots of extra prednisone in my closet (there's a story to that) and it's staved off my polymyositis in the past, I decided to start taking it. Yes, yes, I know the side effects. And yes, I know I have to taper off. And yes, I know I shouldn't be self medicating. My fatigue was SO bad from inflammation I had to do something. Bad enough it put me out of work.

Yesterday my energy level was very high. I believe I took the prednisone too late the day before, because I couldn't sleep the night before. I got about 2 hours sleep. Yesterday, for a change, I got up at a normal hour, had coffee and breakfast, got some blood drawn, went to my p-doc appointment, then I even got my car inspected, it was overdue by ... 1 1/2 years!! (story to that too.. NJ changed their inspection laws during the midst of that time). Then later I went to my therapy appointment. Then to Walgreens. To a healthy person, that might seem lame, but frankly I do not get much done at all anymore. I was especially proud that I made both my blood (lab) appointment AND my p-doc. Normally I would have blown off the lab appointment because I don't have the energy and can't do it all. I loved yesterday's energy level.
Today, NOT. I slept nearly 12 hours. Maybe I should give myself a break and realize I didn't get much sleep at all the night before and my body was tired. Maybe I forgot to take the prednisone yesterday? I feel very sluggish and I feel some aching joints ... yesterday my joints didn't ache at all. Even though I'm not diagnosed with RA, I have painful arthritis in my neck and in my knees. On a bad day, when I bend my knee, it feels like a bone is about to pop out the side. Yesterday, they felt OK.

My rheumy appt is on Friday. I don't think he'll be especially happy .. he's been talking about putting me on methotrexate but I've just read that patients with ILD shouldn't take it. So I wonder what he'll move to next?
I am planning on calling my first rheumy .. it'll probably take months for an appointment, but I left him originally because he "pushed" prednisone. Looking back, he DID get me into remission from the PM that I was originally diagnosed with.


  1. Methotrexate is not recommended for people with interstitial lung disease. It sent my CK level through the roof and scarred my lungs all within a week. Ask about Cyclophosphomide or other alternatives.

  2. Yes, thank you Giraffe. I just realized that while writing my post yesterday. Good thing, even though I have a "Top Doc" as a rheumy, I feel as if he is missing lots of things. I'll report back in my blog how it goes.
    Thanks again!!!