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Old 01-09-2007, 06:34 PM   #1
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paruu HB User
polymiositis

Hello im a 22 y/o male and I have been battling this disease since 2003 it first started when I was graduating highschool. I noticed the weakness around 3 months into having higher cpks it started at 36,000 cpks I was told by my doctor I shouldnt be able to walk but I never believed her, a little later I found out she was right =(. Well to the present im taking 80mgs of prednisone but I havent seen any progress. I have taken methotrexate <dont have the bottles infront of me sorry> and also have taken iv ig and still havent seen any progress please help me! any info would help me.

 
Old 01-13-2007, 08:37 PM   #2
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kiwi girl HB User
Re: polymiositis

Quote:
Originally Posted by paruu View Post
Hello im a 22 y/o male and I have been battling this disease since 2003 it first started when I was graduating highschool. I noticed the weakness around 3 months into having higher cpks it started at 36,000 cpks I was told by my doctor I shouldnt be able to walk but I never believed her, a little later I found out she was right =(. Well to the present im taking 80mgs of prednisone but I havent seen any progress. I have taken methotrexate <dont have the bottles infront of me sorry> and also have taken iv ig and still havent seen any progress please help me! any info would help me.
Hi have your tried to findout about the blood product treatment? it is meant to be quite effective. Would mind telling me how you got yr diagnose, was only from yr high CK. Thanks

 
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Old 01-16-2007, 11:46 AM   #3
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Re: polymiositis

I had gotten my diagnosis from a high cpk level and from samples of my muscle tissue. Which blood treatment did you mean if there is one id love to know it

 
Old 01-16-2007, 03:26 PM   #4
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mrmuscle HB User
Re: polymiositis

You should get a blood test for -
Antinuclear Antibodies (ANA)
Sed Rate
(Also called ESR, or erythrocyte sedimentation rate)

When doctor thought i have myositis i had these blood test done along with CPK level. After the blood test i also did a EMG.

Goodluck...

 
Old 01-17-2007, 04:01 AM   #5
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paruu HB User
Re: polymiositis

ty soo much im going to ask my doctor this week about it

 
Old 01-21-2007, 10:14 AM   #6
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Re: polymiositis

I am 29 years old a single mom with 3 kids. I have been dealing with this for almost a year now. I was diagnosed back in July. I first noticed that I felt stiff in the mornings like I had been working out and waking up very sore. Then I noticed that climbing stairs, walking, and bathing myself was very different. I noticed I had a real problem when I was on a job interview and when it was over, I couldnt get up. I started seeing my family doctor and at first him nor his fellow doctors could tell me what was wrong. They did all the blood work and saw that my numbers were elevated but they couldnt come up to an answer as to why. Then he recommended me to see a Rheumy. It took 3 months to see him, during that time, I lost the abality to get up from a sitting position, walk or climb stairs. The moment I saw the specialist, he put me in the hospital. I had 2 mri's, a very painful emg, and then they told me I had poly. My life hasnt been the same since. I am taking tons of med's Prednisone, fosamax, imuran, methotrexate. Im just glad I found this board. I have felt so alone during these last few months, its good to know Im not alone.

 
Old 01-23-2007, 05:08 PM   #7
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Re: polymiositis

since the last time I posted here I was on 80mgs of prednisone and after all the complications I went through with this medicine I decided this is mostlikely not the best choice of actions for me, I have been through diabetes, mood swings, I have gotten sick alot more and extreme weakness. I believe there is other ways than prednisone personally im going to see tommarrow if I can get on another medication and slow down on the prednisone. The reason being is that since I have been on this medication I have been getting steadily weaker and when at was at a lower dose of this med I was alot stronger in fact I was close to being able to walk again. The month after I upped my prednisone I made a huge decline in strength I can hardly push 40lbs with my legs. I will keep you all informed what happens tomarrow please keep me in prayer.

Last edited by paruu; 01-23-2007 at 05:08 PM.

 
Old 01-24-2007, 04:36 AM   #8
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Re: polymiositis

^^^
that happened with me. Before I was diagnosed and taking anything at all, I moved slower but I could still go up and down stairs, I could even drive my car. As soon as I started taking 80 mg of Prednisione, I lost ability to do anything at all. Not to mention, taking the Prednisione at first made me feel drunk 24-7. Now Im on 25 mg. Every two weeks, I drop 5 mg. Im noticing that I can lift my arms again and even lift my legs a little.

 
Old 01-25-2007, 08:48 AM   #9
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Dharlee HB User
Re: polymiositis

Wow, and I thought the prednisone would make you feel more able to do things! I am still waiting to see a rheumatoligist and now I have to wonder about steroid therapy.

 
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