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.

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Trevor49 09/30/2014

I having issues with my legs shaking and my hands. My hands feel a little sore and numb. I was diagnosed with Diabetes because of prednisone. I haven't put on any weight and nothing seems to be getting any better. I'm on 15 mgs of Prednisone each day and 8 tablets of mx each week. I don't know if I got a wrong diagnose or what. A skin biosopy said DM or lupus and my muscle biosby said inflammation plus muscle atrohy. My family doctor said just focus on what doctors have come up with. 4 Years ago I had nerve issues but it worked out this time I losing muscle and energy. I have been taking the meds since June 20 2014 so for4 months without any good results. I see the RA on Oct 7. My blood work comes back normal except now blood sugar.

Trevor

autumm 09/30/2014

Hi Trevor. You are on very small dose of Prednisone and the MTX may not be the right second line drug fir you, it also takes six months to kick in. I am sure your Rheumatologist will re look at your Meds when you see him/her, if the doc does not up the Pred and change the MTX I would be looking fir a second opinion. Have they run the bloods for myositis antibodies. Autumm

lexisgirl 09/30/2014

I know you've mentioned that they don't want to up your Prednisone because of your diabetes but 15 mg doesn't seem to be doing anything for you. I don't think that is the answer. As the others have said, you haven't been on MTX long enough for it to help yet. You need to give it several months. You need an aggressive plan.

In the short term, what would happen if you upped your Prednisone to the standard 60 mg and started/adjusted your insulin? For me, I believe I would be dead without the Prednisone at the start. Once the steroid sparing drug kicks in, you can taper the Prednisone to a more manageable level.

I hope your doctor has a plan to help you feel better. There is no reason for you to keep suffering. You need a plan to help you feel better soon.

trpt1 10/01/2014

Hi Trevor, A low blood sugar will cause shaking in hands and legs. It is important to check your blood sugars. It is also good to have a urine ketone testing kit to check for ketoacidosis. High levels of ketones can cause shaking too. Check blood pressures too.

Be sure to talk with the doctor about which insulin form is the best for you. Some insulin pills can cause acidosis problems for some patients. The shots do not have all the filler stuff found in the pills too. Getting correctly regulated on insulin helps a great deal with feeling better. It is also important to know what time(s) your insulin kicks-in, so you will be prepared to eat and not go low.

You have a lot to get regulated between the insulin and other meds. It would be good to have an internal med doctor close by while you are trying to get situated and regulated. Being able to call someone for help or reassurance might be a good thing to set up with the doctor's office. Maybe a physician's assistant or nurse would be available to talk between appointments as needed.

Write down all your questions for the rheumy. Find out about your autoantibodies for the DM/Lupus. The autoantibodies tell the path that the disease will take in the body. The autoantibodies can be discussed with the doctor. You need to know what to expect with your muscles. If you are not seeing results then meds need adjusting.

Be sure to visit The Myositis Association site at www.myositis.org

Best Wishes. I hope this helps.

freelee 10/07/2014

How did you go with the RA? Losing muscle is not good. How's the shaking now?

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