Hi Trevor49 - last year when I was diagnosed with DM, I had extreme muscle and weight loss - my skin was flabby where it shouldn't be. When I started the meds things got a lot better but I have found muscles don't go back in exactly the right place. I have now gained on my stomach and chest and lost on my hips - it is all a bit bizarre but I am a lot better now than I was last year. It does take a lot of time for things to sort themselves out and I am still learning like many others.

Part of the nature of this disease as I understand it is the nerves aren't sending the right message to the muscles so they atrophy. It is a very interesting notion to fill my arms and legs and there is no muscle tone to be found. When I am working at the gym like crazy, it can take a month to even feel any difference when I search for muscles.

Prednisone will stop or slow down the rampant attack your immune system is having on your muscles but it will not give you strength. You will need to rebuilt that yourself with exercise. But we must exercise carefully and different than you might have before you got sick. I highly recommend working with a Physical Therapist who specializes in muscle disease or stroke victims. "No pain, no gain" philosophy doesn't work with Myositis patients.

Hi Trevor49, Everyone with DM/PM experiences some degree of muscle loss, and even a degree of flabby appearance in arms & legs. At the beginning of my DM, I did not see any improvement from weakness until three months later after being on 60mg of Prednisone and 17.5mg of Methotrexate.

Your doctor is still running a lot of tests to determine DM, PM or IBM. I know that this is a difficult time too. Do your best to try and not get frustrated. This disease requires great patience and improvements are slow. I have learned to not get frustrated and I am so much better at problem solving too. You will learn so many valuable lessons too. Do not be afraid to ask others for assistance with anything that you need too.

Be sure to visit The Myositis Association at www.myositis.org I think you will find the TMA to be a valuable resource too.

Keep us posted.

Thanks again everyone. I try to get out and do things like grocery shop with my wife. I realize that for awhile I might not be able to do the things I enjoy playing. I tried golfing for 9 holes with a cart and usually I hit the ball well but I felt like a beginner and was tired to walk to my ball. I thought I should try to take my mind off of things but I agree I should go see a physio. Does massages help at all. I go see a natural path and get vitiam iv's every once and awhile. Does dm and pm automatically go together. Another question does the muscle biosby hurt typical guy question( I know women are stronger). My Ra said to take the 40 mgs fir another two weeks then drop 5 and she will see the day I drop. I don't know about that as the prednisone hasn't done too much yet and everyone hear says it takes awhile for things to happen. I told her about my head pressure she thinks it's muscle. My chest X-ray and ultr sound came back clear. My blood work was fine except a little about aversge on the liver she said because of the disease. So touch wood I'm dealing with the weakness and head pressure which got worse when I started the prednisone. She said keep an eye on shortness of breath and swallowing. I'm sure I will have more questions but I'm tired and can't think. Oh ya do you get dry eyes with this disease.
Thanks again everyone and I hope everyone had a good day
Trevor

Hi Trevor. Yes you lose muscle and dry eyes can be part of this disease. You can buy drops over the counter to help the dry eyes but an appointment with an eye doctor as you take steriods is a good idea. Try not to exercise too much right now until the inflammation in your muscles is under control and your bloods settle down the take advice on the exercise you do. I did not have a muscle biopsy, my Rheumatologist could see the inflammation on the MRI, I have Myositis specific auto antibodies and with all that and his clinical experience he made the right diagnosis. He was also not keen on doing a muscle biopsy as at this stage I was very ill and already taking big doses of steriod which do interfere with the results., when you see your Rgeumatologist do ask why you are not on a high ter dose of steriod as you are not responding as yet to 40mgs. Most of us start at 60mgs and some even higher. Best wishes Trevor, hope it all goes well. Autumm

Hi Trevor, See the eye doctor ASAP. High doses of Prednisone can cause high pressure in the eyes called Glacoma. I see my eye doctor every three months just to check eye pressure. High pressure in the eyes can cause blindness, so it is important that you see the eye doctor. Watch that pressure!

Dry eyes might be Sjogren's syndrome or just regular DM/PM dry eyes. I have dry eyes, nose, mouth, and down there. Mucous membranes can dry up considerably with DM/PM. I take an OTC eye drop of natural tears which helps as needed. I also use Biotene mouth wash which helps with dry mouth. Definitely discuss the dry body parts with the eye doctor and rheumy.

Your doctor is checking for DM or PM. While it is actually possible to have both DM and PM, it is not a typical situation.

Your doctor is still running tests. I hope the Prednisone will kick-in and some muscle strength will return.

I hope this helps. Keep us posted.

I also have experienced muscle loss. i did not begin to regain any of the strenghth back until about a month AFTER i stopped meds....the docs at the clevelnd clinic said that this can happen. didnt make sense to me but ill take it.

Just in follow up to trpt1 with the glaucoma check. Last Nov I went for my posterior eye check and my eye pressures were normal, because they had done the check with dilated pupils when I saw my reg eye Dr. in January she checked my eyes without dilating the pupils, my pressures were normal but the anterior angle in my eye was too narrow.( Where the fluid from the front flows to keep the pressures normal) the angle should be 4 and mine were 1, 0is closed. Had to go to the retinal specialist yet again and had an iridotomy. He put a hole in my iris with a laser.
Very important to have our eyes checked!

Hi Trevor. I was told by my Rheumatologist that a diagnosis of PM with DM was not possible and needed further investigation to get the correct diagnosis. He says you can only have one or the other, I note the doctors on the TMA site agree with him. Autumm