Did you discuss your prognosis with your health care provider? The form of dermatomyositis you have been diagnosed with is a less common form. Dermatomyositis usually causes muscle weakness, sometimes in the extreme. The National Institute of Health Medline Plus site has a good information page: http://www.nlm.nih.gov/medlineplus/ency/article/000839.htm. The amyotrophic form is diagnosed when the characteristic rash is present without the muscle weakness. In some cases, the muscle weakness comes along later and in some cases it doesn't. Sometimes this illness spontaneously remits, meaning it just disappears. The course is pretty variable.
Are you seeing a specialist? Plaquenil is a drug that is commonly prescribed for certain autoimmune diseases. It was originally used to treat malaria. You need to have your eyes examined by an ophthalmologist at least once a year while taking plaquenil, because in rare cases it can cause irreversible damage to your eyes. I personally have been on it for nearly 10 years without a problem for rheumatoid arthritis.
Is your provider doing a workup for cancers? Or have you already had a malignancy workup? I ask because in some cases amyotrophic dermatomyositis patients have what is called an occult malignancy, or hidden cancer. So it is important that you be worked up for that to rule it out (http://dermatlas.med.jhmi.edu/derm/result.cfm?Diagnosis=991582806). I hesitated to say that because I don't want to scare you. Statistics are statistics and that doesn't mean you will develop anything more than the rash that you have. But it's important information to know to be sure you are getting the care you need.
We also have an information on dermatomyositis: https://www.empowher.com/condition/dermatomyositis. My best friend in nursing school had it as well. She required chemotherapy for a while, but she had a bad case. Initially she was bedridden and could not carry her baby, but hers remitted and she became a fantastic critical care nurse, so please know that you could have a perfectly normal life after this diagnosis.
Please let us know if we can point you toward further resources. Thank you for visiting the site, and good luck to you.
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Hi Lucylu
Did you discuss your prognosis with your health care provider? The form of dermatomyositis you have been diagnosed with is a less common form. Dermatomyositis usually causes muscle weakness, sometimes in the extreme. The National Institute of Health Medline Plus site has a good information page: http://www.nlm.nih.gov/medlineplus/ency/article/000839.htm. The amyotrophic form is diagnosed when the characteristic rash is present without the muscle weakness. In some cases, the muscle weakness comes along later and in some cases it doesn't. Sometimes this illness spontaneously remits, meaning it just disappears. The course is pretty variable.
Are you seeing a specialist? Plaquenil is a drug that is commonly prescribed for certain autoimmune diseases. It was originally used to treat malaria. You need to have your eyes examined by an ophthalmologist at least once a year while taking plaquenil, because in rare cases it can cause irreversible damage to your eyes. I personally have been on it for nearly 10 years without a problem for rheumatoid arthritis.
Is your provider doing a workup for cancers? Or have you already had a malignancy workup? I ask because in some cases amyotrophic dermatomyositis patients have what is called an occult malignancy, or hidden cancer. So it is important that you be worked up for that to rule it out (http://dermatlas.med.jhmi.edu/derm/result.cfm?Diagnosis=991582806). I hesitated to say that because I don't want to scare you. Statistics are statistics and that doesn't mean you will develop anything more than the rash that you have. But it's important information to know to be sure you are getting the care you need.
We also have an information on dermatomyositis: https://www.empowher.com/condition/dermatomyositis. My best friend in nursing school had it as well. She required chemotherapy for a while, but she had a bad case. Initially she was bedridden and could not carry her baby, but hers remitted and she became a fantastic critical care nurse, so please know that you could have a perfectly normal life after this diagnosis.
Please let us know if we can point you toward further resources. Thank you for visiting the site, and good luck to you.
June 21, 2010 - 5:07pmThis Comment
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