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.

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wonup 02/08/2013

Hi everyone! I have had some wonderful messages from a number of you wondering how I was doing, so I thought I'd do a quick update. Since being diagnised since August 1 with a necrotic (thus stubborn) form of Polymyositis, I spent 3 1/2 months in bed unable to roll over by myself and worse. I only got up and hauled off in a wheelchair to PT twice a week so I wouldn't turn into a pretzel. Finally the 80mg a day of prednisone, the 20 mg a week of MTX and the 150mg a day of azathioprine kicked in. I dumped the wheelchair, the walker, the crutches and the cane. I am driving just fine, swim and do PT 5 days a week, and lift weights inbetween. Stairs are very hard and I need a cane for those...hamstrings and glutes are struggeling a bit.

But I am back to consulting and have taken on some board development and strategic planning with non profits that deal with disabled services. The groups were thrilled they could find a facilitator that could relate!
The fly in the ointment are stubborn CPK levels that hang at 3000. My Neuro and Rheumy are in a debate about my CPK molocules being too large for my kidneys to scrub out, or if there is inflamation and muscle damage still going on undetected. I feel pretty darn good with much increased strength, so no one can figure it out. My Rheumy wants me on Retuxin, The Neuro says no, Ivig. The Neuro is worried about Retuxin knocking out my immune system more than it already is, and for a longer peroid of time. So the debate rages on whilst I am happily having planning sessions with clients, and thankful to be back at 75%. Polymyositis has been a long haul!
I am writing a blog about my experience with this disease that is posted to several of my doctors websites. The PT is probably the easiest to get to. Just google Healing Motion, Philomath to read the blog...and friend us! As Shawna is good at reminding me....patience is the never ending virtue in this difficult disease!!

deleted_user 02/08/2013

Thank you for sharing this! For those of us new here and facing diagnosis, it can be scary. Reading about your return to normalcy (working, walking, etc) provides more encouragement than you know!

After competing in bodybuilding in late 2010 and now being on part time medical leave, hardly able to walk a block, in pain and using a handicapped permit, all I can say is recovery here I come!!

Tricia

nanny1611 02/08/2013

It was great to read your update, wonup, especially since you had such a stubborn case. I'm so glad for your progress and that your life is almost back to normal. Hurray! Best wishes to you for continued improvement.

deleted_user 02/08/2013

Heidi, so happy to hear alll the good news. Yes that old patience thing. Myositis is a slow m oving target. You have kept at it and made good decisions along the way. I am sure you will continue to do that. Id vote for ivig but you know that already. Keep Ritux for later if you need it.

Glad you are back to workingand keeping your mind sharp. For those of us with go get em attitudes it can be trying to wait and wonder and wait some more for the puzzle to come innto view...

Just so happy for you.... Shawna always practicing patience!! Hard to admit i was a classic type A personality once upon a time. I like the new more patient me better by far, but it takes getting used to.

pluggingon 02/08/2013

IVIG would be my choice--especially if it would facilitate reducing the Prednisone. Rituxan worked well for me too. Have had several infusions over the years. Hope you get the right meds!

deleted_user 02/08/2013

Just wondering if you started out on the combination of Prednisone, MTX, and Azathioprine from the get go?

trpt1 02/09/2013

Wonup, I am so glad that you are able to move forward. You have a very inspirational story. It looks like your consulting work is the perfect job too! Your progress is encouraging. I will look up your blog. Keep us posted.

autumm 02/09/2013

Hi Heidi. So lovely to have news of you. You are always inspirational and I miss you. I too have learnt Shawna's patience and am a different person since last August. Keep going forward Heidi. Hope they get on top of your CK's at some point. Keep in touch,its good to hear from you. Autumm

Cadolph 02/09/2013

Thanks for sharing. It's really good to hear a positive story about recovery.

Glad to hear that your able to work at consulting. It's probably the perfect kind of work to do and I think does a lot for your well being. As long as you have balance.

Cheryle

deleted_user 02/12/2013

Awesome that your doing better, and I hope things continue to move forward. If I had to choose between the IVIG and the Rituxin I would do the IVIG they say it's safer, and It worked for me. I have not taken rituxin yet, but I will soon so I can let you know on the first hand basis as well in the future.

Keep Strong,

Mike

brendacaytonwhite 02/12/2013

It is always great to hear from another who hasn't given up and who faces each day with a challenge to this illness that tries to defeat us, that we will never give up. My Rheumy is also concerned about the increase in my CPK. I went from the lower 200s to 1770. I felt something was wrong but wasn't sure what it could be. I am taking 20mg of Opana every 12 hrs for my nerve pain and it works. It has me doing some strange things like waking every hr or two and talking all night long in my sleep. I can fall asleep just sitting in the seat of the car or lying down to read. My glucose still goes up and down probably due to the prednisone, which my Rheumy took from 5mg a day to 7.5 mg a day. I have been taking just 7 mg a day the past few days because I got tired of cutting my pills in half before I could use them up and getting a 2.5 pill. I am in the process of moving. I have found a place that is affordable and has the amenities and space that I need. I am so excited. I started a class at the Bible Institute at my church. I can't remeber everything that we discuss, but I won't give up. I have my own way of studying.

Like you we have to fight for our health and against this illness. We have to let others know that we are not defeated. Keep up the good fight and maybe one day we will meet in person to work for better treatment and to make sure that those who do not have access to providers who understand this illness or who don't have insurance coverage to pay for the various medications that we have to take. We are winners.

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