Polymyositis & Dermatomyositis Support Group
Polymyositis (PM) is a type of chronic inflammation of the muscles (inflammatory myopathy) related to dermatomyositis and inclusion body myositis. The inflammation is predominantly of the endomysium in polymyositis, whereas dermatomyositis is characterized by primarily perimysial inflammation.
Hi everyone, I have been reading this site for some time now and finally plucked up to the courage to join. I have DM and was diagnosed in March 2013 - I was put on Prednisolone 20mg and Imuran but the Imuran didn't agree with liver, so Rheumy tried Plaquenil which I started in September 2013 and started to taper the Prednisolone - had a few problems, I went down to 7mg and started to flare up, so put up 8mg - still too low, now I have spoken to Rheumy today and she has said to go to 9mg and keep taking the Plaquenil - I would have thought after 4 months is should have worked? I feel worse this past week - Rheumy doesn't want to put me on another drug and said to try and stick with it. At the moment I am very depressed and in a lot of pain - my other question is does anyone get really bad stiffness in their hands and feet first thing in the morning? It seems to be getting worse - could it be due to weather changes? It is a lot colder at the moment (I'm in England) - could that be a factor?
When I was diagnosed with PM, I was placed on 100 mg. of prednisone for a week, then went down to 70 mg. for another week, after which I was on 60 mg. for awhile. As for the hands, mine are always stiff and swollen, especially the wrists. But I'm not sure if this is due to PM or Lupus, which I have as an overlap. Best wishes to you for feeling better. Hopefully your doctor will provide some answers.
Your rheumy will look at the blood work. During a flare, the blood work is the indicator on whether to go up one or two milligrams or much more depending on the severity. I usually go up around two milligrams to halt the flare.
If your disease is active, then you will not be able to taper below a certain level of steroid until the disease gets under control. Tapering below the point of active disease will cause a flare. I will taper by a half milligram of prednisone every two weeks (fourteen days). If my arms feel ANY pain or weakness, then I will not taper down until I feel absolutely stable. I must sometimes stay at a level of prednisone for several months if necessary to feel stable.
The whole point of the medication is to help you function well daily and feel good. The medication will need adjustments if you do not feel well. Never be in a hurry to taper too quickly.
Most of us will need to take some level of steroid the rest of our lives. Some people do successfully taper off completely. In my case, I have active disease. I have never been able to go below 4mg of prednisone without a flare. I also have pulmonary hypertension and kidney disease. I do think my organ involvement may have something to do with flare triggers with my health.
Gatoraid is a good drink for tapering. Gatoraid has a nice balance of sodium, sugar, and electrolytes for good hydration. It is important to support the kidneys when tapering so that you will feel better. Sodium, sugar, and lots of water/hydration are important for tapering.
The stiffness in your hands/feet could be Raynaud's which is common with DM/PM. Keep your hands and feet warm. Do look up Raynaud's on google to read up.
Welcome to the group!