Hi McCourtjis. I have PM. Thankfully I have not yet had a flare since diagnosis. My Rheumatologist describes it as a returning if weakness with or without rising CK levels. I have the anti Jo antibody so I believe left untreated I would get breathing difficulties as well. I travel a lot, I am in Turkey right now, I have with me Prednisone, if I feel any of these symptoms he has told me to take 25mgs of Prednisone daily until I can get to him. I don't have DM but I know from what I read that although DM is easier to treat than PM the rash of DM can be most difficult to treat. Hope this helps and you are doing ok.mbest wishes. Autumm

Hi Mccourtjs, I have DM. During a flare for me, I will have a rise in liver enzymes ALT and AST as the main indicator of my flares. There may also be a rise in other indicators like aldolace, and LDH. I will feel weakness in both arms. The weakness will travel to both legs too. My legs will usually feel like heavy bags of cement when walking across the room. My chest (heart) always feels weak during a flare too. I will usually feel weird in the head too. The rash on my hands and neck might show more red.

My doctor will have me take around 15mg of Prednisone for three days. The doctor runs a complete metabolic panel blood test that gives liver, kidney & lung scores. The blood test indicates how bad the flare. Usually after the three days on 15mg, I will be told to lower or raise the Prednisone based on the severity of the flare. In my experience, I might need to stay on 7mg or 8mg of Prednisone for a week and later begin a taper off.

I am in my fourth year with DM. I am actually on fairly low doses of Prednisone & Cellcept since I have a milder case of disease at this point. Each person is different with DM/PM.

I hope this helps.

I have DM, poly, and markers for Lupus. I am on 10 mg of pred daily as well as 3 pills twice a day of 750 mg Cellcept. I also take a MTX shot once a week. I have not been feeling well and although I usually have pain, I have had severe pain in my neck,right shoulder and elbow My Rheumy had me take 30 mg pred a day for 3 days then 20 for 2 days and tomorrow back to normal or 10mg. The pain is getting better but is still there. I don't know how well I should expect to feel even when I am not in a flare. I frequently don't feel well. Looking for something to compare to even though I know there is no norm.

Heya McCourtjia, I was diagnosed with DM 10 yrs ago. I still don't know what a "flare" is and I was anxious to see what others here had to say. Some seem to have "markers" that indicate what a flare is for them, I don't... Every year about March time frame I seem to have alot of trouble tho. End up spending more than usual time in bed and have joints that seem to flare up with calcification. This last March it was my right knee. It got all red, swollen and produced a lot of "milk of calcium" from one spot. Couple years ago it was my left elbow. At that time we thought it was an infection and I spent a week in the hospital on a lot of antibiotics. They never found any infection and eventually the left elbow swelling and redness stopped.

Once or twice a year I get into the "too much time in bed" mode and it usually lasts 6-8 weeks. I hate it. Never really see anything in my blood tests or CK levels, like autumm.

I wish there were a signal that I'm in flare mode, but I don't see one, other than the "too much time in bed" issue. I hate this diagnosis, cause to me it seems to cover a very very wide range of situations. We all express differing problems and have different blood work signals. Seems to me that we all have different disorders, but medical science doesn't know enough to separate them into known groups. So they are all dumped into the DM/PM/Lupus groups.

During my flares I just take it and try to be ok with my situation. In the past Ive gotten prednisone shots from my Doc and they helped. This last March I increased my prednisone, but hate doing that since tapering is such a PIA. At these times my doc also tries other dmards, but Ive not responded or tolerated them well.

Hi McCourtjis. Du grab gives a very good descritpion of DM with calcification which is triggered by the seasons. It is well documented in the achedimic papers and Anti Jo PM is also triggered in the Spring. We are all different, it has been explained to me by my Rheumatologist that the disease, it's pathway and its treatment us mainly dictated by the auto antibodies we have, PM is PM and DM is DM but the difference is the antibodies our immune system is making against this disease. Science has come a long way in finding these antibodies, they find new ones all the time. It is so important to have the right doctor who knows all this at the beginning. It can take time to find the Meds or combination of Meds to hit this hard. I don't know how long since diagnosis it is fir you. I am three years in and it's only this year I look and feel better. It takes a long time. We all have good days and bad days but eventually with treatment the good days become more than the bad days. Best wishes. Autumm