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...
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.
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.
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?
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.
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.
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.
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
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?
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.
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.
I hope that your CPK level was closer to normal and that you are feeling better.
I was just diagnosed today with PM and a tentative diagnosis of RA, in addition to Raynauds. They are starting me on 60mg of Prednisone for 4 weeks then tapering down. I hope to find others that are suffering with this to chat with because it has been a long, hard, road to diagnosis and I have just as many questions as before.
My Rheumy said I must know my body very well because I am in the beginning of the PM and RA, thus the pain and weakness are not severe yet. However, I did not tell her that I have a very high tolerance for pain even to having a broken wrist and not even going to the doctor. Just thought it was very sprained, et. bruised, swollen, and painful. I have known something was wrong for 2 years at least because of the increasing fatigue, muscle weakness and breathlessness.
Anyway, I'm really glad to have a diagnosis and others to share information with. Thanks.
Shari, Could you tell us what antibiotic you were on, for how long, and is there a theory behind why this antibiotic would help myositis? I am glad you are doing so much better. Gives a bit of hope to those of us still plodding along in the thick of it.
polymyositis 
Re: polymyositis 
