Hi DMSucks. It can sometimes take a bit of time to find the right Meds to treat your DM. How long have you been taking Imuran. It can take six months or longer to work and for you to feel better. Do you know what auto antibodies you have as knowing them will help your doctor manage you DM. I am not sure how long you have had DM but it took me eight months to turn the corner. Perhaps you could tell us where you live and someone on here might suggest a Rheumatologist with more experience of DM. Have you looked at the TMA Myositis site. There is so much information on there which you will find very helpful. Don't get down about this, you will get there, it can be difficult to find just the right Meds for you but they will do it. Best wishes. Autumm

Hi DMsucksss, I read your post. Here are some things to consider... There is a protocol for DM/PM in diagnosis and medications. The EMG, muscle biopsy, and autoantibodies are some of the standard test run for a DM/PM diagnosis. Some doctors might run an MRI as a part of the work-up. I had a full body CT scan after diagnosis for a cancer check. You can read about the testing needed for diagnosis on the TMA site. Do read the other posts on this site too.

DM/PM is severe inflammation. In PM the inflammation is in the muscles. In DM, the inflammation is around the muscles. DM overlaps with Lupus and/or Scleroderma. Think of the DM as a component of Lupus or Scleroderma. DM is also considered a connective tissue disease. A good rheumatologist that is familiar with Lupus, Scleroderma, RA, etc.. should be able to handle DM/PM well. The DM/PM component might be rare but the systemic part of disease is familiar to a good rheumy. You can read about medications used for DM/PM on the TMA site. Finding the correct dosage amounts makes a difference in feeling well.

Your doctor is sending you for the EMG. There are some who begin with connective tissue disease where test results are inconclusive. DM/PM might not show up right away in test results even if there is some myopathy (muscle weakness). I have talked with many people over the years. Some people need to wait a while for a diagnosis because all the different components do not come together right away. Like Autumn mentioned, do not get down. The doctor will find where you are in the process. There is also the consideration of Myasthenia Gravis or one of the other muscle weakness diseases that are much like DM/PM in symptoms.

The whining that many of us do is often about kidney/liver, heart/lung or some type of organ symptoms. We are all different in how we feel. Blood work helps to bring some answers. Do ask the doctor about what your blood work is revealing at this point.

Try to relax. I hope this helps. You are at the beginning of your testing. I will put in some prayers for an accurate diagnosis and correct medications. I hope you feel better soon. Best Wishes.

I agree. There is a protocol but Myositis isn't very common so many doctors don't know about it. Check out the TMA site to learn more and encourage your doctor to learn more about Myositis if they will. Being your own advocate is important.

One thing that impacts your well being is antibodies. I recommend you get a myositis antibodies test too. It is simple blood work. An EMG can be a piece of the puzzle but not everyone with DM has muscle involvement so it might not show anything. But even then, that is good to know.

Try to be patient. I know it is hard. It took me 4 years to get diagnosed and then I ended up at Johns Hopkins to better tune my diagnosis.

Thanks everyone!
I actually did got diagnosed with DM by 100%. My antibody is Anti-Mi-2. I also have done the full set of blood works, whole body CT, EMG, ECO, EKG etc. when i was first checked.
My probelm is with this flare, as I wrote before. Because it is not shown in the blood tests I feel like i have a big responsibility on my shulders, since there is no a real test for flares... I understood that the results of the EMG I will do next, will not be a real parameter and i will increase the prednisone's dose anyway...

Hi DMSucks. Try not to worry. The auto antibody you have does respond very well to treatment. You will get there. Best wishes. Autumm

Hello DMSucksss, i understand what you mean about the flares and to the rest of the support group I am still here after 5 years. I have had so many ups and downs recently that just remembering what day of the week is can be a challenge many days. TYoday I tried to just lay in bed longer to see how it feels. It didn't works as my mind wouldn't stop. Anyway, I haven't had what i consider flares often over the years, but when I do I know it is a flare even though the doctors including my latest neurologist doesn't seem to believe it is a flare. He told me that what I described to him wasn't a flare as if he has had them, so now whenever I feel it may be a flare I request a CPK test and normally it has elevated. I have found most of the doctors no matter their specialty can only guess what is happening and try to change me to a different expensive medication, some which I don't take. Go on what you think is happening, research every medication they suggest, making sure to determine of the side effects is worth the risk. As for the prednisone, once I start tapering of my pain or whatever gets worst I return to my level of prednisone which helps. I am currently taking 15 mgs of prednisone per day and 20 mgs MXT per day for the polymyositis alone with a few other itmes for my neuropathy. I have not been without pain for 5 years so I just deal with with as best I can. It has become mind over matter. I hope this helps somewhat. I am thankful to the Lord for my being here everyday and being able to do most things i want to do. I am still expecting to be able to walk one day without a walker or wheelchair as my companion. i did fall trying to get out of the shower a few days ago and it scared me as I fell about 3 years ago and fracture both thighs. I don't think I have totally healed from that yet and I am taking 5000 units of vitamin D and calcium everyday as well as the reclast shot to make my bones stronger. You can do it all through Christ Jesus. My faith is what gets me through each day.

Brenda. It is so good to hear from you. I am really sorry that you still have pain and you are still struggling with PM. I often think of you. Best wishes. Autumm