Got some bloodwork back... CPK down to 550. Holy cow, did not expect that much of a drop, and Doc said that he was pleasantly suprised as well. I will cut the Prednisone from 80mgs/day to 60. Which is still a massive dose, but at least it's not 80. I was so excited that I didn't sleep. (that's a steroid joke...)
I have been reading about the term "athletic identity". I set up a friend's bike trainer in my house, and can spin a little as long as my posture and core can hold out in a road biking position (for now, about 25 minutes). I mentioned earlier this week that I walk-jogged. These activities, more than anything else that I've done so far, have helped me feel like myself and that I am re-engaging in a familiar world. I am trying to come up with a plausible research question to study this phenomenon in my dissertation. Another aspect of identity that I feel I have lost is that of a woman. I have been wearing t-shirts and sweatpants, have acne and a beard, have a misshapen body, and in general, feel invisible as a female. It's more than simply not feeling attractive to the opposite sex. I find myself wanting to wear impractical, ultra-feminine clothes. And have an immaculate pedicure all of the time. I feel androgynous and marginalized from any gender-related contexts. So, girling it up will probably be the next order of business, which will probably shock the hell out of some people.
Hi Katie. I have an illness related to polymyositis, dermatomyositis. I have had it since late 2006. The symptoms of DM are the same as for PM, but with the addition of skin rashes. In my case the skin rashes have been pretty minor, just enough to make it DM and not PM.
ReplyDeleteBeing a 5'10 200 lb man and now weak as a feather, I can relate to feelings of loss of gender. I look the same as I always did, but falling on sidewalk ice and needing help to get up is something totally new to me.
I was always very physically active, but never into sports, so I didn't go through the loss of athletic identity.
I don't know where I'd be if I hadn't started off with an above average cardiovascular system and leg strength.
You are very fortunate to have such good friends to come over and care and clean for you.
As your doctor probably told you, large doses of prednisone work on PM/DM very quickly, in weeks. But our bodies can't tolerate large doses of prednisone for long.
The methotrexate takes 2-6 months to work, but if it does work, you'll be able to taper off the prednisone, and then in a couple of years, taper off the methotrexate.
If the methotrexate doesn't work, your rhuemy will probably try azathioprine next. There is also mycophenolate, cyclosporine, cyclophosphamide, and rhetumixab that may work long term. All require 2 to 6 months of to see if they have any beneficial effect.
I'm up to trying cyclophosphamide.
While my CK (same as CPK) has been down from 20,000 to as low as 865, I've never gone into remission. It has mostly been between 1,500 and 4,500.
If you start to get muscle weakness from the prednisone, your rheumy will probably switch you to IVIg (intravenous immunoglobulin g), which is also a fast acting way to reduce autoimmune responses while waiting for a longer-term medicine to kick-in and work.
Good luck and hang in there.
(I'm on Facebook too. IF you'd like to friend me there, put PM in the friend request so I can add you to the right friend list.)
Keith Tarrant
Winnipeg, Canada