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Old 07-24-2011, 07:43 AM   #1
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Smile polymyositis

Would like to chat with people who have polymyositis and share how we can help each other cope with this illness. I think talking about what we share can help because we all don't share the same pain that i have read in some of the threads. I have lived with this with this illness for decades it seems. I am now 62 years old, I got this when my son was 4 years old he is now 30. God Bless and stay strong...

Last edited by mod85; 09-24-2011 at 09:27 AM.

 
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Old 07-24-2011, 08:16 AM   #2
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Re: polymyositis

I have had it since 2008 or maybe longer. I have never met anyone with PM. I am 65.

Last edited by moderator2; 07-24-2011 at 08:50 AM.

 
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Old 08-24-2011, 11:01 AM   #3
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Re: polymyositis

Hey just wanted to commend the fact that you have been battling this condition is amazing!! I've had this condition for three years and battle with my emotions constantly. I have more good days these days but i still have days when i am sore and fatigue. I've yet to hear i am remission. I am doing the antibiotic treatment hoping this is the answer to combat this disease.

 
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Old 09-23-2011, 10:50 AM   #4
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Re: polymyositis

Quote:
Originally Posted by sharimagia View Post
Hey just wanted to commend the fact that you have been battling this condition is amazing!! I've had this condition for three years and battle with my emotions constantly. I have more good days these days but i still have days when i am sore and fatigue. I've yet to hear i am remission. I am doing the antibiotic treatment hoping this is the answer to combat this disease.
Today I go to the doctor hope everything will check out, hoping my CPK will be normal.

 
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Old 09-24-2011, 07:15 AM   #5
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jode HB User
Re: polymyositis

Hope it went well at the doctor. My mother had polymyositis. The drs. had no idea for a while as to what she had. Mom has been gone since 1996. She was on predisone for 3 years. It took a tole on her bones. She was 75 when she passed. Are you on meds?

 
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Old 09-24-2011, 05:30 PM   #6
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Re: polymyositis

Unfortunately when i went to the doctor my cpk was still relatively high. In August it was at 1140. My next appt is next week i will update on my progress.

 
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Old 11-01-2011, 11:42 AM   #7
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Re: polymyositis

Thank you soo much for sharing I am 47 and have twins 12 yrs old and my son is autistic, I am soo scared I won't be around to take care of him as long as I can he's a 5 year old in an 12 yr olds body. My daughter his twin is very independent and strong so I know she'll be fine. I think I'm letting the disease get me down mentally and physically I was only diagnosed a year ago and am struggling with the side affects of the predisone. It makes me very anxious and depressed sometimes I'm tired but feel like I always need to be doing somthing. Not to mention I've been waiting almost 2 years to get some kind of income from SSI, so financially it's very stressful. God bless you and thank you again for sharing I'll hang in there.

 
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Old 07-13-2012, 08:53 AM   #8
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Question Re: polymyositis

Quote:
Originally Posted by sharimagia View Post
Hey just wanted to commend the fact that you have been battling this condition is amazing!! I've had this condition for three years and battle with my emotions constantly. I have more good days these days but i still have days when i am sore and fatigue. I've yet to hear i am remission. I am doing the antibiotic treatment hoping this is the answer to combat this disease.
Sharimagia,

I have read through all your posts and am very interested to hear how you're doing now. Are you still on antibiotic treatment?

My dad was diagnosed with PM about 5 years ago. He is 86 years old. The year before he was diagnosed, he was on a bowling team, golfed regularly, and was very, very active. Now he's in a wheelchair, and his dream is to be able to walk again.

He's tried methotrexate, IVIg, and currently has been tapered down to a low dose of prednisone. I think he also tried CellCept. I don't think he's tried imuran.

I'm really curious about whether the antibiotic therapy can help him. I'll tell him to ask his rheumatologist about it.

How are you doing? I sincerely hope your treatment is helping you. God bless you.

Peggy

 
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Old 07-13-2012, 08:56 AM   #9
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Re: polymyositis

p.s. I hope and pray that all of you are doing well, and I hope you all find relief from these terrible diseases.

Peggy

 
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Old 07-14-2012, 06:39 AM   #10
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Re: polymyositis

Hey Peggie!!
I am doing great!! My cpk has stayed in the normal range for the past 9 months. I am jogging, exercising just staying as active as I can. I hope your father is doing ok.
All the best,
Sharima

 
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Old 07-14-2012, 11:25 AM   #11
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Re: polymyositis

Sharima,

That is wonderful news!! How did you get better? Was it the antibiotic treatment? If so, how long did it take to get better, and did you have any bad side effects?

Thank you so much for answering all my questions.

Sincerely,

Peggy

 
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Old 07-18-2012, 08:23 AM   #12
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Re: polymyositis

I believe it the antibiotics. At first i was only taken the antibiotics but then i read that if you have alot of inflammation its hard for the medicine to work because it has to pass the inflammation to get to the tissues. So i started slowly taken the steriods and then i went back on the methotrexate. I was taken a low dose. My numbers were going down slowly but it was rising again and i was worried i wont get better. I was told by another that i need to be aggressive with the medications so i increase the steriods to 40 mg a day and 10 methotrexate a week. I did that for three months and finaly the doctor told me my numbers were normal. I took the antibiotics for a few more months and taper the other medications. When i went back to the doctor and he inform me that my numbers were still in the normal range i stop the antibiotics. I m still tapering from the steriods and methotrexate. Im now taking 7 mg of pred and 6 methotrexate a week. When i go back to the doctor in three months and if my numbers are still in the normal range im going to ask aout stopping all the meds.

 
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Old 07-18-2012, 08:25 AM   #13
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Re: polymyositis

It took a year and half.

 
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Old 08-12-2012, 02:36 PM   #14
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Re: polymyositis

I am glad I found this forum. I was diagnosed with pm back in May of this year and I gave to say its been the hardest diagnosis I have ever had. I was in the hospital for8 days. Had a muscle biopsy to confirm the diagnosis. Along with an EMG. Currently I'm on 20 mg pf methotreate and 80 mg of predisone. Since May my Cpk levels have dropped down to the normal range of 145. Im doing physical therapy but it seems like its just not helping. I can walk with helP but I can't lift myself out of a chair. I have to have someone stay with me constantly and have to have people get me dressed and go to the bathroom and I can't even lift my 10 month old son and my 9 year old doesn't understand why I can't get up and play with him. I feel like I'm a burden on everyone plus all the medication is making me very irritable and emotional. I was just wondering for those out there how long has it taken to kind of get back to some normalsy if there is anything like that. Thanks so much again.

 
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Old 09-18-2012, 05:43 PM   #15
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Re: polymyositis

Unfortunately when i went to the doctor my cpk was still relatively hig

Last edited by peterr88; 09-18-2012 at 05:45 PM.

 
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