Wednesday, June 3, 2009


I count down the days to doc appointments like I'm 5 years old and it's Christmas. I crave the feedback and cling to it until my next appointment. I try to think very hard about any questions that I want to ask. Of course they always pop into my head at random moments and by the time I'm organized enough to write them down, I've forgotten. Some things that I want to ask this time are:
  • Could adjusting hormonal birth conrol have been a factor in triggering the onset? What, if any, are the ramifications for taking it in the future? Could it, or is it ever used to regulate autoimmune/chronic inflammatory disease issues? (this is just heresay, but I had someone tell me that they know someone who uses birth control to regulate fibromyalgia. I also had someone tell me that they used antibiotics for PM. I asked about this last time, and the doc didn't acknowledge this as a viable treatment that he was familiar with.)
  • If my CK's are any lower than the previous visit (550), how close will I be to "remission"? What is remission, and what factors constitute it? If, in fact, I am within a "normal" range with the CK's, what next? It can't just be all about the CK's, because my body is still weak, stiff, and has some locked-up joint issues. Basically, once we get CK's to a normal level, what does that mean and where do we go from there?

I know I'll have more, and would appreciate suggestions for other questions.

There are some smaller, lingering symptoms that I want to mention. It's hard to remember what I've reported in prior visits, especially when I've been more concerned about the bigger stuff, like enzyme levels and functionality. Just want to make sure that I report some of the smaller tweaks that I notice, such as:

  • tingling in back and feet (especially after exertion)... I experienced this at the beginning, and I still notice it.
  • Red/pink splotches on my knees that come and go. Not like a rash, just a bright color change. I do have a minor rash on my knuckles, probaby just a little crossover of DM.
  • My voice has never really come back to normal. I have a nasal/throaty sensation, like too much air is coming up through my throat and nose when I talk, and it's really annoying. Other people say they can't hear it, but it bothers me. I sound a little hoarse and nasal when talking, and my singing voice is definitely poorer.

On a completely different topic, I am not embarassed to admit that I like the Miley Cyrus song about the mountains. Who of us can't relate to climbing mountains as a metaphor for life's struggles? It's a catchy little tune, and the words are corny enough for me to close my eyes and think of them as a mantra as I'm spinning on the elliptical trainer at resistance level 3 (out of 20) with everything I've got. Keep on moving, keep on climbing... sing it, sister. I'll keep spinning.


  1. The CK is a rough measure of damage to muscles. Your current strength is a the accumulated damage and building of your muscles over time.

    So CK will somewhat lead your changes in muscle strength, and that is what I've found over the past 2-1/2 years.

    In some people, they can develop PM and DM with little change in CK. So my observation above doesn't apply to everyone.


    Remission isn't just CK, it is also about how you feel, how you look, and does your CK go right back up when the prednisone drops to zero.

    I believe a normal CK for a white female in her 30s is under 150. For some muscular black men, they've found normal CKs as high as 400.

    When you get to remission, you can expect your doctor to want to keep you on your prednisone sparing agent (methotrexate, azathioprine, mycophenolate, etc) for up to 3 years. If you don't have any relapses, you can expect he'll probably take you off all meds.

    You might be really lucky and never have a relapse in your life. I've read that happens to about 20% of us, mostly people who go into remission pretty quickly, which it sounds like you are.

  2. Correction: "The CK is a rough measure of damage to muscles. Your current strength is a the accumulated damage and building of your muscles over time."

    Should say: "The CK is a rough measure of damage to muscles in the past day or two. Your current strength is a the accumulated damage and building of your muscles over time."

  3. It is difficult to not put too much stock in CK readings, but it's hard to not hang on to them when it's one of the only measurable numbers that we have to work with. I feel like I am bouncing pretty quickly, and am aware of that 20% statistic. Another general statistic that I don't understand, however, is that most of us under the curve will regain about 80% of strength. How does that happen? If you get the disease in stable remission, where did that missing 20% of strength go?