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Questions about Polymyositis from Tricia

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#1 Tricia



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Posted 20 April 2008 - 03:07 PM

Hi Janey

I was diagnosed with PM in March 2008. I am interested to know how your progress went since you were diagnosed.

I am surprised to hear that you started excercising not long after diagnosis, my dr says no exercise and I read something today that mentioned that as we use the muscles, more enzymes are released which causes more weakness.

Did I understand your post correctly?

I would appreciate it if you can tell me how you did on the medications and how long you have been diagnosed



#2 janey


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Posted 20 April 2008 - 04:30 PM

I was diagnosed in August 2003 and put on methotrexate. At that time I was just lucky to be able to pull myself up from a chair. Going up steps was impossible as was exercise. During the first year my exercise was making it through the day, some gentle yoga and stretching. The methotrexate starting working for me within a few weeks and I could tell by feel that the poly was coming under control. Sure enough - the CPK started coming down but then plateaued. By 2005 I was out "strolling" again and doing the rubber bands very gently. To date, I still am not back to a regular exercise program. My CPK has been normal for several months but I have other problems that are restricting my exercise ability. I do what I can and continue working with my doctors to get my problems solved. I start cardiac rehab in the morning so I hope that's going to be the last hurdle. My doctors (rheumatologist and cardiologist) tell me that the rubber bands are fine, but no weight lifting yet. Nothing has atrophied but I have lost a lot of muscle mass so I'm starting from scratch.

My immunosuppressant is now cellcept and I get IVIg infusions every 7 weeks. It looks like that will be me regimen for a couple more years at least.

Hope this helps.
Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
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International Scleroderma Network (ISN)

#3 Tricia



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Posted 21 April 2008 - 02:38 PM

thank you for your reply

I hope you continue to do well


#4 Peggy


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Posted 22 April 2008 - 10:43 AM

This post really sounds exactly like me. I too have just been diagnosed with Polymyositis and my CPK numbers keep climibing. I just had my first round of IVIG treatment in April and am scheduled for the next round in May. Once the June ones are done then they will check the CPK numbers and if they are better then insurance will pay for more IVIG. I also am on Cellcept. I am really hoping that these treatments will work.

Thanks and warm hugs,