Hi DMSuckness. I am sorry you have DM. Age is no barrier for this disease and many people younger than you have it. You don't tell us what Meds you are taking, what dose you are on or how you are coming off these Meds. It is normal to feel really out of sorts when you are tapering something like Prednisone. It gives such a 'feel good' feeling with energy when you are taking it in high doses. As you come down from your high dose then you get withdrawal symptoms and feel terrible, this can be feeling very low, pain in your joints and feeling unwell. The trick is to recognise this and learn to tell it apart from a flare or you could be on it forever. Your doctor is right, he is treating 'how you feel' and not your CK levels. My doctor mentioned my CK levels only once and that was at diagnosis but his first question to me is always 'how do you feel' your lab work of course will let him know if your disease is returning not just by rising CK levels. I am sorry you have this illness but you will recover, you do need time and patience and a positive attitude. Keep out of sunlight and wear a good sunblock even in the winter, try to avoid flourescent lighting. Best wishes. Autumm

As Autumm mentioned, if you are weaning off prednisone, it can make you feel really bad. Whenever my dose of prednisone was lowered, I would give the feeling of being unwell about 7-10 days to begin to disappear. If it started to disappear, then I would "push through" the weakness and pain. But if the feeling of unwellness stayed the same or got worse, then I went back up to my previous dose of prednisone. Now that I'm off prednisone, I watch for any signs of weakness, extreme fatigue, difficulty walking, etc., and have blood work done to look at inflammatory markers. I am very blessed, because watching my diet and taking supplements have helped keep my inflammation in check most of the time. My neurologist told me to especially watch for a flare after a sickness, during times of stress or trauma, following a surgery, or if I get another disease. My dad had a different autoimmune disease, and his doctor always said to watch for flares during a change of seasons, especially Spring and Fall. Hope these ideas help you, and best wishes to you.

Thanks al lot!
Nanny1611, why do you see a neurologist?

Hi DMsucksss, When tapering the steroid you will feel lousy like Autumn & Nanny mentioned. Tapering does have flare type feelings with heavy legs, tiredness etc.. There is a way to tell the difference between tapering withdraw and a flare. A DM flare will have high liver enzymes of ALT, AST along with maybe a rise in Aldolace, and other scores in blood work. DM is different than PM. DM will often return to normal range scores with CPK. A DM flare may not always mean a rise in CPK, but other blood work will rise during flare.

How you feel is a main parameter in tapering steroid. Your doctor will know from blood work if you are flaring. You will eventually learn to read your own blood work. Do ask the doctor how to read your blood work because this will give you some control.

Your doctor will give you a tapering schedule. For example, in tapering, when I got to 10mg of Prednisone, I would taper down by a half milligram every two weeks. Like 9.5 for two weeks, then 9mg for two weeks, then 8.5 etc.. If I felt bad, then I would stay on a particular dosage longer until the bad feelings went away and my body adjusted to the steroid. Tapering is not a race. Tapering puts stress on kidney adrenal glands and must be done carefully with doctor supervision. I would not taper lower until I felt ready and the bad feelings were gone.

Do read up on DM. The more you are informed then it helps to have some confidence & control. Always ask the doctor a lot of questions too. I would write down my questions for each appointment. I still have questions four years later!

Best Wishes.

@DMsucksss
Whenever I was sick, the doctor sent me first to a rheumatologist, but he was never able to help me. He wanted to put me on 3 meds, but couldn't tell me why. All he said was, "Well, it's obvious you're very sick." From this I went to several different doctors who couldn't help me either. It wasn't until I was almost dead (literally) that I was sent to a neurologist, who was able to diagnose me and start treatment. She then transferred me to another neuro in the practice, who successfully continued treatment. In addition to being an autoimmune disease, myositis is also considered a neuro-muscular disease, and the second neuro was a specialist in that area. These 2 neuros were used by the Lord to save my life.

Oh, I understand your way to diagnose was tough. Hope that now you are well!