Guest guest Posted August 29, 2008 Report Share Posted August 29, 2008 Thank you all for the answers and suggestions. I will google “Oramorph”, . Sue, I will also google “Zyrtec” since different countries call their drugs by different names. I have used Flexiril in the past when the muscle pain was very distracting. Perhaps I could get a scrip for it again. Konnie, I have taken magnesium for years. Occasionally I run out and I know it within 48 hours! The restless legs and twitching become so bad that I have even less sleep. I have never tried St. ’s Wort, but will do research on it. The other two, melatonin and 5HTP, are contraindicated with Dermatomyositis because they increase photosensitivity. In 2004, while taking both, I suffered Bullous Pemphigoid on at least 60% of my body. Characterized by oozing pustules that become infected when they burst, the pain and itch were so intense, that I spent 6 months in a drugged haze. My recollection of that year is poor, needless to say! All the Myositis diseases are quite rare. They are AI diseases and are treated as most are with immune suppressants. There are 4. IBM is Inclusive Body Myositis and is the most virulent and rarest. It does not respond to treatment very well and more men than women get it. PM is Polymyositis and sometimes is accompanied by Interstitial Lung Disease. JDM is Juvenile Dermatomyositis. Along with the incredible fatigue, poor muscle tone and skin eruptions, children with JDM often experience Calcinosis which are bits of calcium that form near joints and erupt—usually painfully—through the skin. Without intervention, some calcinosis will lock up limbs—especially elbows. My childhood Calcinosis was quite mild with eruptions along my spine, my shins and at my right elbow. The largest was only ever 3 mm. across. (That might be three-eighths of an inch.) These stopped when I was about 29. Left untreated, most folks with Myositis will become progressively weaker because it is a muscle-wasting condition. (Our hearts are a muscle. Lungs inhale and exhale because of muscles. Food is swallowed by muscles.) When I was first diagnosed, and googled it, both the Arthritis and Muscular Dystrophy people claim it as one of their “stable” of diseases. I get my statistics from several papers authored by Dr. Callan and associates at the University of St. Louis. I printed it from the NIH site and used to carry it with me when I first did the rounds of the medical specialities that should be consulted. Cardiac issues often arise with Myositis. Women with DM have a higher incidence of ovarian cancer than the healthy women population. The rate of spontaneous remission for DM is 5%. Yes, it is difficult to diagnose. According to the Ontario Lupus site, it takes an average of 6 years to finally obtain a definitive diagnosis for SLE which is more common than DM. I was very fortunate in that I see my wonderful rheumatologist at both her office and the Rheumatology clinic at the large downtown teaching hospital. I dragged myself into a clinic examination room on the Monday after having moved house on the Friday. She recognized all the symptoms because, apparently, I was “test book perfect”. (Ha! The only time in my life!) These include the butterfly rash of Lupus, extreme fatigue, incredible itching scalp accompanied by dandruff, stiff, swollen fingers with hardened, pitted bumps at the knuckles, stumbling and loss of balance, inability to raise the arms above the head, painful movement, heliotropic rash (purple) along the eyelids like garish, mauve eyeliner and a vee-shaped red rash on the neck connecting around the back like a shawl. I had it all. She called in all her markers and coordinated all for the arrangements for testing. On Thursday I saw the head of Dermatology. He had a resident student with him. Boy, did they get excited! They produced jeweller’s loupes to examine the knuckle bumps called Groton’s papules. (I was the subject of “rounds” for teaching purposes later on.) Within two weeks, I had consulted a neurologist and a pulmonary specialist and undergone all kinds of tests. Phew! Here I am, after much learning, experimentation, frustration, tears and joy, enjoying better health than I have in more than 12 years! Sorry for the book length. Judith Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2009 Report Share Posted January 20, 2009 Hi Judith, My wife has DM, and spent almost 10 months in the local hospitals here in BC (most of her family is in Toronto).She came home on NOV 2/08. We are wondering how you are doing on LDN, the dose you started on etc. and your experiences such as if LDN helps skin, muscles ,mood, sleep etc. Thanks. Jim T. > > Thank you all for the answers and suggestions. I will google " Oramorph " , > . > > > > Sue, I will also google " Zyrtec " since different countries call their drugs > by different names. I have used Flexiril in the past when the muscle pain > was very distracting. Perhaps I could get a scrip for it again. > > > > Konnie, I have taken magnesium for years. Occasionally I run out and I know > it within 48 hours! The restless legs and twitching become so bad that I > have even less sleep. I have never tried St. 's Wort, but will do > research on it. The other two, melatonin and 5HTP, are contraindicated with > Dermatomyositis because they increase photosensitivity. In 2004, while > taking both, I suffered Bullous Pemphigoid on at least 60% of my body. > Characterized by oozing pustules that become infected when they burst, the > pain and itch were so intense, that I spent 6 months in a drugged haze. My > recollection of that year is poor, needless to say! > > > > All the Myositis diseases are quite rare. They are AI diseases and are > treated as most are with immune suppressants. There are 4. IBM is > Inclusive Body Myositis and is the most virulent and rarest. It does not > respond to treatment very well and more men than women get it. PM is > Polymyositis and sometimes is accompanied by Interstitial Lung Disease. JDM > is Juvenile Dermatomyositis. Along with the incredible fatigue, poor muscle > tone and skin eruptions, children with JDM often experience Calcinosis which > are bits of calcium that form near joints and erupt-usually > painfully-through the skin. Without intervention, some calcinosis will lock > up limbs-especially elbows. My childhood Calcinosis was quite mild with > eruptions along my spine, my shins and at my right elbow. The largest was > only ever 3 mm. across. (That might be three-eighths of an inch.) These > stopped when I was about 29. > > > > Left untreated, most folks with Myositis will become progressively weaker > because it is a muscle-wasting condition. (Our hearts are a muscle. Lungs > inhale and exhale because of muscles. Food is swallowed by muscles.) When > I was first diagnosed, and googled it, both the Arthritis and Muscular > Dystrophy people claim it as one of their " stable " of diseases. I get my > statistics from several papers authored by Dr. Callan and associates > at the University of St. Louis. I printed it from the NIH site and used to > carry it with me when I first did the rounds of the medical specialities > that should be consulted. Cardiac issues often arise with Myositis. Women > with DM have a higher incidence of ovarian cancer than the healthy women > population. The rate of spontaneous remission for DM is 5%. > > > > Yes, it is difficult to diagnose. According to the Ontario Lupus site, it > takes an average of 6 years to finally obtain a definitive diagnosis for SLE > which is more common than DM. > > > > I was very fortunate in that I see my wonderful rheumatologist at both her > office and the Rheumatology clinic at the large downtown teaching hospital. > I dragged myself into a clinic examination room on the Monday after having > moved house on the Friday. She recognized all the symptoms because, > apparently, I was " test book perfect " . (Ha! The only time in my life!) > These include the butterfly rash of Lupus, extreme fatigue, incredible > itching scalp accompanied by dandruff, stiff, swollen fingers with hardened, > pitted bumps at the knuckles, stumbling and loss of balance, inability to > raise the arms above the head, painful movement, heliotropic rash (purple) > along the eyelids like garish, mauve eyeliner and a vee-shaped red rash on > the neck connecting around the back like a shawl. I had it all. She called > in all her markers and coordinated all for the arrangements for testing. > > > > On Thursday I saw the head of Dermatology. He had a resident student with > him. Boy, did they get excited! They produced jeweller's loupes to examine > the knuckle bumps called Groton's papules. (I was the subject of " rounds " > for teaching purposes later on.) Within two weeks, I had consulted a > neurologist and a pulmonary specialist and undergone all kinds of tests. > Phew! > > > > Here I am, after much learning, experimentation, frustration, tears and joy, > enjoying better health than I have in more than 12 years! > > > > Sorry for the book length. Judith > Quote Link to comment Share on other sites More sharing options...
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