More research needed on immunosuppressant treatment for myositis

More investigation into the efficiency of immunosuppressant and immunomodulatory agents in dermatomyositis and polymyositis is needed according to the Neuromuscular Disease Group of The Cochrane Database of Systematic Reviews.*

Immunosuppressants suppress the immune system and  immunomodulatory therapies modify it to alter symptoms of disease. These treatments are used commonly in clinical practice with corticosteroids or when corticosteroids do not work or are not tolerated.

"The small number of randomised trials are inadequate to decide whether these agents are beneficial in dermatomyositis and polymyositis. One small trial of intravenous immunoglobulin in dermatomyositis suggests that it is beneficial. More randomised controlled trials are needed."  This is a Cochrane* review plain language summary, prepared and maintained by The Cochrane Collaboration, Copyright © 2011.  Full text available in The Cochrane Library (ISSN 1464-780X).

* What is Cochrane - a systematic review of randomised controlled trials - using evidence from randomised controlled trials (RCT's) is "likely to provide much more reliable information than other sources of evidence."

Daily tasks with myositis

On Thursday, I did the food shopping. 3 days later and I am still in pain. My arms and shoulders feel like they have been lifting 20 kilo weights. Lifting, carrying,  packing, unpacking - I never realised how many tasks were involved in "doing the shopping".  I hate shopping.

Infections in Myositis

Thanks to the Daily Strength Polymyositis & Dermatomyositis Support Group it is a great supportive forum and this link was suggested Opportunistic infections in polymyositis and dermatomyositis when we were discussing infections.
From what I, as a layman, can understand it means that we do get more infections and the worrying thing is they can kill us! "high frequency of opportunistic infections in PM/DM, resulting in an increased mortality rate". 
Most of the infections (89%) were lung and digestive in this study and digestive includes candida albicans. "daily doses of steroids, lymphopenia, and lower serum total protein levels were significantly more frequent in the group of PM/DM patients with opportunistic infections." I think this means, but I stand to be corrected, that the causes for the infections could be the steroids, most of us take daily in our first year after diagnosis, the lowered white blood cells which I think are a consequence of medications and lower serum total protein levels which are found in many autoimmune conditions.
"results suggest that PM/DM patients presenting with factors predictive of opportunistic infection may require closer monitoring." For me this means stop ignoring my sinus infection and my candida and go back to the doctor. (AGAIN) My attitude has been oh, they are annoying but not life threatening. I now realise I have to look after myself as no one else is going to.

This is it

I spent so long (around 10 years) looking for this diagnosis and now it is the last thing I think about.  I use to spend so much time on the web looking for clues and researching about what it could be that was attacking my body and now maybe I should do some research on what can help.

Maybe I have been coping by ignoring it but now I am realizing this is what I have to learn to live with. It IS myositis.

How rare is Myositis?

Myositis is a rare disease diagnosed in just 1 in 100,000 people a year.*  Some people think the number should be higher as many cases may go unidentified. It is often mistaken for the symptoms of aging even by sufferers or fibromyalgia or depression.  Many patient see seven or more doctors before getting the correct diagnosis of Myositis. This is what happened to me.
                                  

The three main types of myositis, or inflammatory myopathy, are polymyositis, dermatomyositis, and inclusion body myositis. All 3 diseases involve chronic muscle inflammation, accompanied by muscle weakness.  

• There are 2 separate ages of onset: 10 - 15 years and 45 - 60 years.
• Female to male ratio is 2 :1 except in inclusion-body myositis (IBM) where it is reversed.
• Prevalence of the disease is the highest in the Japanese.

* 2013 American College of Rheumatology

What does Myositis mean for me?

I have polymyositis,which means inflammation in many muscles, if I remember correctly.

What it means to me in my everyday life is listed here:

• I can no longer sit in a chair for longer than 1/2 an hour without having to get up and stretch
• difficulty with walking up and down stairs
• difficulty with getting out of chairs
• pain in my muscles - especially those in my upper arms and upper legs
• very difficult to squat
• very difficult to get up off the floor
• constant pain in muscles
• arthritic pain in most joints, except knees
• living on pain killers
• enlarged muscles in my thighs and upper arms that make me look overweight
• difficulty swallowing dry food
• difficulty talking for more than about 10 minutes
• pain from muscle use e.g. more than 1/2 an hour on computer gives pain in arm, neck and shoulders
• when reading, text becomes blurry
• chopping veges and other food prep is difficult and painful
• standing for extended periods causes extra pain
• many doctors visits to get prescriptions
• specialist's visits
• blood tests every month

Of cause every person is different and these are just some of my daily challenges.