Tuesday, June 9, 2009

Late nights

It seems as if sleeplessness has returned... so blogging resumes. I have been sleeping well lately despite the Prednisone, but the last several nights have turned into a pattern of insomnia. Come on, sleep, don't leave me now.

I had a rheumatologist check-up this week, and the visits seem to be falling into the following pattern: we chat about how I'm feeling, discuss symptoms and side effects, he asks me questions about what kinds of things I'm doing in my daily activities, I ask him questions about the disease, he does some muscle strength testing, and then I go to the lab for bloodwork. We discuss drug adjustments, I get prescriptions renewed, and then I'm off to ponder what just happened. As usual, I come away with mixed feelings. On one hand, the doctor seemed extremely pleased with my progress and said that recovery is going remarkably well. He indicated that I am gaining a good deal of strength, that I am doing it fairly quickly, and that I am ahead of the curve. On the other hand (not to be ungrateful about positive feedback), if I'm doing so well, then what in the hell kind of miracle has to happen before I'm better? A pat on the head and a glowing report don't really make me feel any different. I mean, I'm still weak (I'd say about 50% of normal capacity), I'm stiff and sore, I have some messed-up joints, and I look like crap. Ok, ok... I know that this disease takes 2-3 years to coax into stable remission (if you're one of the ones for which remission even happens), and I've only been receiving treatment for 4 months. Patience, I know. I've heard it again and again. If the doctor tells me to be patient one more time, I'll likely kick him in the shins and blame it on the steriods.

I will reduce the Prednisone to 50mgs/day for the next 2 weeks, and then to 40mgs. I don't have my CK levels yet, but I would think that they're getting pretty close to normal. One of my questions was regarding the cause of residual muscle weakness once the disease is "out" of my muscles as measured by the CK levels. The answer I got is that muscle is difficult to build back once destroyed, and once you add the ravages of disease and Prednisone, that it becomes even more difficult. I liked this answer because I interpreted it as "disease-be-gone". I don't want to imagine the disease inside my muscles like some kind of demon or parasite. If I'm weak, I want it to be my own body that needs some coaxing and care, not some invader that's stealing my life and strength. Of course, the irony of this thought is that the disease isn't foreign at all... it's my own body doing its best to kill me.

A word about friends... Polymyositis has starkly revealed the fragility, unfairness, and morbidity of the human condition. However, it has also illustrated sweetness and beauty that we often forget about in the day-to-day minutiae of life. I have seen the absolute best brought out in those around me, and am amazed at the human capacity to care and love. I am blessed.

My God, am I still awake? I was hoping that some thought-purging would knock me right out. Did I mention that I have been told that I will most likely be on Prednisone through the end of the calendar year 2009? Ouch.


  1. Are you on anything other than Prednisone for the PM? Any "prednisone sparing agents"?

    Prednisone will keep you awake, and make you hungry, I'm sure your rheumy mentioned that.

    Too much prednisone for too long also caused myositis, which you mentioned a couple of months ago. I have no idea how much is too much or or how long is too long.

    But I am sure in my mind that the prednisone will hold you back in regaining your strength.

    But once you are in remission and off prednisone, you should see good gains.

  2. Yes, Methotrexate. 20mg's/week. So far, so good with it. The insomnia was pretty bad when I first started the Prednisone, but got better once I got a little physically stronger and could roll over and adjust positions in bed, which was a comfort issue. I am seeing a common theme in message boards that the 10mg mark of Prednisone seems to be where folks get tripped up and experience setbacks with disease flares. I'm confident that I'll be feeling good for a little while on higher dosages of Prednisone, but will be curious to see how the taper goes and if/when I feel any disease flares once I get low enough.

  3. When are you going to share your Hash House Harrier name? Awesome that you were able to run the hash, especially with the hills on such a hot day.

    Your friend,
    Sucking Udder (Jon Fricke)
    named at MH3 and currently FH3
    (also proud to have helped with your naming...) I haven't signed on, so this will have to say 'anonymous'.