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Old 06-02-2006, 03:37 AM   #1
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candlelite HB User
(polymyositis) talking all medications, but not improving

I have been dealing with this disease for the last four years. I had a muscle biopsy to confirm that I have Polymyositis. I have been taking predisone and metho injections for the last four years. Just recently, I have been recieving ivg twice a month since september. I am at a point where I can't climb stairs, nor can I walk for a long period of time and can't get out of a chair. Can anyone tell me if they are better and leading a normal life. thank you.

Last edited by candlelite; 06-02-2006 at 03:41 AM.

 
Old 06-12-2006, 09:53 PM   #2
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Cool Re: (polymyositis) talking all medications, but not improving

Quote:
Originally Posted by candlelite
I have been dealing with this disease for the last four years. I had a muscle biopsy to confirm that I have Polymyositis. I have been taking predisone and metho injections for the last four years. Just recently, I have been recieving ivg twice a month since september. I am at a point where I can't climb stairs, nor can I walk for a long period of time and can't get out of a chair. Can anyone tell me if they are better and leading a normal life. thank you.

I was diagnosed with Dermatomyositis about two and a half years ago. Like you I take Predisone, and the Metho. At different times I am unable to climb stairs and have to get around in a wheelchair. Other times I have alot of energy and am able to get around with little difficulty.

For the most part I have good times and bad times. For me the good times are more common than the bad days are.

I do get extremely tired at times and have to take daily naps. I find that if I avoid stress and caffeine I feel better.

I wish I could tell you what makes me not feel so tired but I have yet to figure it out myself. I just know I rejoice when I am feeling good.



Take Care,
Karen :

 
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Old 07-19-2006, 09:30 PM   #3
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mword HB User
Re: (polymyositis) talking all medications, but not improving

Quote:
Originally Posted by candlelite
I have been dealing with this disease for the last four years. I had a muscle biopsy to confirm that I have Polymyositis. I have been taking predisone and metho injections for the last four years. Just recently, I have been recieving ivg twice a month since september. I am at a point where I can't climb stairs, nor can I walk for a long period of time and can't get out of a chair. Can anyone tell me if they are better and leading a normal life. thank you.
I was diagnosed with Polymyositis March of 2004 but I noticed the symptoms on January of same year. I had a hard time lifting my arms and difficulty walking. I was in ER with 21,000 CPK. I thought I had a stroke the doctor did not find anything wrong with my blood work except my CPK was grossly elevated. The ED doctor told me to stop taking Lipitor, muscle weakness is one of the side effects but this did not help. My condition got worst and finally my PCP referred me to this wonderful doctor that was very concern with my condition that he did all the arrangement to get all the testing needed to diagnose my condition. He ordered, full CT scan, EMG, Muscle Biopsy, tons of blood work. He also sent me to one of the specialist up in UW to get a second opinion. They explained to me that I could be in a wheel chair, won’t be able to hold my head, or shallow and do a regular bowel movement but the condition is treatable. I noticed that I can't lift my head when I'm lying down and difficulty swallowing. I am also a type 11 diabetes and taking glucophage 500mg 2x daily plus meds for hypertension.

My first treatment consist of 10 mg Methotrexate, 20 mg of prednisone 3x times a day, Fosomax, Vitamin E and D and Multi vitamin – the result I got so weak I felt like a cancer patient on chemo treatment, I can’t barely walk or even talk. It was scary. My blood sugar skyrocketed to 400-500. My physician changed my medication to Imuran 150 mg and told me to take 40mg of Prednisone in the morning. He increased my glucophage to 850mg2x to control by diabetes. Three days later I can feel that I’m getting my strength back but I noticed my muscles are a lot weaker. I have to hold on to the walls and tables as I walk. I called my doctor and he adjusted the Prednisone to 20mg once a day. That did the trick. I got my strength back and CPK went down to 10,000. The treatment started in April by June I am able to walk a lot better and able to empty the dishwasher. But my physician was concern that my CPK was still elevated, he added an infusion treatment of Gamma Globulin for 3 months/3 consecutive days in a week. My God that brought my CPK to normal after infusion was completed.

My physician adjusted my Predisone every month for 1 1/2 years and I stopped taking it last year. I saw him last week and I am down to 50 mg of Imuran. I am 54 years old so I continue taking Fosomax and multi vitamin. He also ordered a bone density test and actually the result improves compare to the one I had 3 years prior. I am completely back to normal my CPK is 43. I play 18 holes of golf walking and do a strength exercise at least 3 times a week. I am very aware that I could have a relapse but at least I know that there is a treatment. As a patient I have to be proactive and I don’t hesitate to discuss it with my doctor if the treatment is not working. I told my PCP that I am not taking Staten drug for cholesterol, she told me to take Omega 3 and my cholesterol went down 30 points. Good luck, there is a treatment for Polymyositis, work with your doctor. Sorry that this is very long message but maybe this will help you discuss your treatment with your physician. My doctor is an autoimmune/rheumatoid specialist. I hope you will find the right treatment.

Last edited by mword; 07-19-2006 at 09:48 PM.

 
Old 07-29-2006, 10:01 PM   #4
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JoJoJim HB User
Re: (polymyositis) talking all medications, but not improving


Dear Candlelite,

I was diagnosed with Polymyositis over six years ago. Like you, I did not have a good response with the Prednisone. . . or Methotrexate. . . or Cellcept. It was NOT until I started taking "Cytoxan" that my symptoms began to subside. I was nearly bedridden for over two years as I was so weak from the Polymyositis and could do NOTHING on my own. Swallowing, getting off the toilet, bathing and even sometimes eating were all but impossible.

However, NOW I am pleased to tell you that most of my functions have returned almost to normal. While there IS muscle damage and I DO struggle with fatigue and some 'off days', I am quite strong now. I don't think I'll be up for a marathon anytime soon as I do have some limits now.

I was more than willing to become a human guinea pig when this disease was at it's worst. I was willing to try ANYTHING. The only thing I did not get to try was the I.VIG treatments, however, if my symptoms return to that degree, that will be the FIRST thing my docs will try. The downside to all of the medication is that these types of medications can literally crash your whole immune system and you have to be REALLY careful. I had multiple infections with one being septic. Prednisone also induced Type II Diabetes which I have NO problem with now that I no longer have to take the prednisone.

There is HOPE, don't give up.

Peace Always,
the DragonLady
__________________
Do not meddle in the affairs of Dragons, for you are crunchy and taste good with ketchup.

 
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