Hello everyone: wondering if anyone had similar experience or can offer advise. For the past year have been feeling extreme weakening. Went to Rheumatologist last week and my enzymes came back at 3000. This was a day after working a tough and physcial 8 hours shift. Usually after working 8 hours I am flat on my back the next day. They called and asked me to come in for more testing but I was too tired so I went the next day. My levels had dropped to 300 so they were happy but I am went for an mri of my arms which they said was ok. I'm scheduled for an mri of my thighs next week as well as an emg. He suspects polymyositis which is rare but would explain my sudden difficulty in using a curling iron; brushing hair; nauseau, muscle fatigue etc. Anyone with similar issues? Thanks. Leslie
Hi, how did your testing end up? I was diagnosed 6 months ago with polymyositis. I had been suffering fatigue, aching legs and arms and throat cramps for over a year. I had been to a doctor at the time and was diagnosed with depression which of course was not the real problem. Eventually through some routine blood tests a year later i was sent to a neurologist who performed electronic muscle testing which showed i had the disease. I didn't have the muscle biopsy done as well as the doc said it doesn't always show up in that and is quite painful to have done. So after the initial shock of it all i was put on prendisalone, a high dose of 60 mgs which was horrible for a few months but my CPK count came down very quickly so the dose was dropped. Due to side effects from the steroid i was changed to Imuran, which i am still on. I have good days and bad days, get tired easily and if i do too much i will have the aches for a few days, however i feel much better than i did. Looking forward to the day i can go off all the chemicals though.
I hope all worked out well for you.
I've been battling high CK levels for one year. I was diagnosed with PM with a CK level of 9500. I was also diagnosed with Lupus and Sjogren's Syndrome. It seems to be most difficult to control the CK level from going crazy.
I've tried Imuran and Methotrexate with Prednisone included with both drugs. Guess what? Neither drug has helped so far. The Prednisone level was lowered, the CK went up, and the back,arm, neck, and shoulder pain has returned.
Has anyone experienced this before? I'm hoping a Rheumatologist or Neurologist will help me in this new year.
Last edited by Administrator; 06-27-2012 at 10:26 PM.
I am happy for you that both Prednisone and Imuran are working in your favor. It gets frustrating not knowing when the pain sets in my upper body if the flare is from Polymyositis muscle inflammation, or a Lupus flare? Most of the time the CK level indicates the level of muscle inflammation in my case. I hope my doctor can think of a combination of medicines to help my conditions.
Good luck with Imuran. Hope it works out well this year for you.
Last edited by Administrator; 06-27-2012 at 10:25 PM.
I'm sorry to hear the meds are not working for you, it must be really frustrating. When my prendisalone was reduced to 5 mgs all the pain returned so my neurologist increased it back to 10mgs, now i am relatively pain free. Its interesting you mentioned the pain in your neck, when i was first diagnosed i was getting a lot of sharp pains in my neck at the front. Doctor couldn't explain it but i guess it was muscle related.
I really hope you can find someone to help you and prescribe you the right medication. Goodluck with it all.
Last edited by Administrator; 06-27-2012 at 12:33 AM.
I was diagnosed with Mixed connective tissue disorder. It is overlapping of three different ones with poly being one of them. After much investigation I have realized that I have the poly symptoms. My doctors keeps saying MCTD and doesn't really listen when I tell him that I think the main complaint would be the poly. I tried steriods but had a bad reaction. I am on a long acting pain medication and cymbalta but the muscle weakness is very hard to handle. But the fatigue is the worst. What are the definite tests for this? I have a high ANA with a speckled patterned titer? I'm embarrassed to say that I am still not up on the proper language after 10 years. I usually try to ignore it until I have a flare up and then I start investigating again for any new info. Best wishes to you.
Hi, i was referred to a neurologist when my CPK level came back high and was associated with muscle weakness, tiredness and aching legs. The neurologist then performed an EMI and concluded it was polymiositis. Most people have a muscle biopsy to confirm the diagnosis, but my doctor advised against it and said it was not necessary. I sometimes wish i had it done so i have no doubt that what i have is poly. The neuro has said that if it wasnt poly the meds wouldn't be working so i guess he knows what he is talking about.
I agree with you the fatigue is the pitts, and something others don't understand. It must be really frustrating not knowing exactly what you are dealing with. I really hope you find someone who is willing to listen to you and help you find out exactly what is going on.
Best of luck and take care.