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Old 05-19-2008, 11:20 AM   #1
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toribird97 HB User
Polymyositis

Hello,
My mom was diagnosed w/polymyositis i guess almost 5 yrs ago. She tried the ivg treatments, methotrexate, she was on prednisone, & several other drugs that did not seem to help. she is 56 yrs. -old she took herself off of all medication probably about 1 yr ago. i think she just got discouraged because of the weight gain and there were no positive results -- her enzyme level always seems to be about 1300, which from what i read doesn't seem to be that high for someone with this disease? she now has a hard time going up stairs , she has been falling alot, what comes next??????? anyway i was searching online & found out about this INCLUSION BODY MYOSITIS and was wondering if anyone knows about this ? also does anyone who has been diagnosed with PM have any suggestions or any kind of physical therapy ideas? i hate to see my mom hurt like this--with no way to help her--any ideas ???

 
Old 05-19-2008, 12:50 PM   #2
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duncan1 HB User
Re: Polymyositis

I would be willing to bet that there's a 50/50 chance your mother will recover or stabilize, after an extended course of minocycline. I believe that most cases of myositis are triggered by an underlaying systemic bacterial infection, and consequent systemic inflammation and muscle damage. A broad spectrum antibiotic, with powerful anti-inflammatory properties like minocycline should be a mandatory first step in treating the disease. I believe that true auto-immune disorders are very rare, and that infectious disease is the usual trigger.

Last edited by duncan1; 05-19-2008 at 01:32 PM.

 
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Old 05-23-2008, 08:31 AM   #3
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toribird97 HB User
Re: Polymyositis

its funny that you say an antibiotic because i actually asked her doctor about antibiotic therapy & he said that it would not help. everything that i have read says that it is in fact a bacterial infection so why not try antibiotics??? i believe that when she got the shingles years ago it triggered PM -- do you have any info supporting the antibiotic theory? i would be greatful for any info.
thanks

 
Old 05-26-2008, 09:03 PM   #4
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duncan1 HB User
Re: Polymyositis

I would suggest that you go to wwwdotpubmed.com and do a search for myositis and antibiotics.

Last edited by moderator2; 06-21-2008 at 05:31 AM. Reason: unnecessary quote

 
Old 06-21-2008, 03:45 AM   #5
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littlehouse114 HB User
Re: Polymyositis

HELLO,

My dad has polymyositis. His numbers are in the 500's. He is VERY weak and is taking prednisone every day and some kind of chemo therapy. He needs help. He is EXTREMELY depressed and gives energy to his disease everyday by talking about it all the time. I love him and want to help him. I'm trying to get him accepted into Shans hospital. We are awaiting a reply to see if he is accepted. He's on a special diet that's called the 40-30-30 diet. It seems to have helped his numbers to get lower. Is there a support group in Florida with this disease?? Please help. I am very worried about him. Thank you.
Stacy

Last edited by moderator2; 06-21-2008 at 05:32 AM. Reason: unnecessary quote

 
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