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What can I expect with a diagnosis of mild dermatamyositis amyotrophic long term?

By June 21, 2010 - 4:33pm
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I as just diagnosed with mild dermatamyositis amyotrophic. I was put on Plaqinel. What can I expect in the long run. I am 58 years old. Thanks

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EmpowHER Guest

Can anyone respond to the possible "cause and effect" issue of "stress" preceding the onset of dermatomyositis? In other words how many patients report some distress, depression, loss of loved one, etc., in their life preceding the outbreak?

October 24, 2010 - 5:53am
(reply to Anonymous)

That is such a great question, but unfortunately, there is no scientific answer available.

Excessive stress is associated with many conditions, and may either "cause" a condition, or the condition may "cause" the stress. In other words: there is always the possibility, but is difficult to measure in individual patients. One person's perception of stress will differ from another person's, and there are no reports that detail how many patients report distress or death in the family prior to this specific health condition. It is anecdotal, at best, to say that a death in the family "caused" a condition, as that person may have been developing that condition for a long time in their body prior to the death. There are too many factors and variables that play a role in disease progression and stress' impact in the body and mind to provide general statements via patient reports.

There are clinical studies in well-controlled labs that do show stress levels (usually measured by cortisol levels) as being associated with disease progression and/or disease prevention.

Are you wanting to know if your excessive stress "caused" your condition?

October 24, 2010 - 11:55am
EmpowHER Guest

I also have been diagnosed with the same form of dermatamyositis. Mine has reoccured after 25 years disease free or remission. I am on a low doseage of prednisone and was just out on plaquanil. I've only been on the plaquanil for one month. Each day is a struggle for me but I do have hope. I do believe it can go into remission again. I pray lots and get lots of support from family. Keep your head up, and God bless you. Rayne in Mississippi

October 20, 2010 - 11:28pm

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 - 5:07pm
(reply to Cary Cook BSN RN)

Thank you for your response, you have supplied me with alot of beneficial information.

I am seeing a specialist out of town so my diagnosis came today by phone. Of course the questions come later after you have hung up. I will be seeing him again soon but wanted to educate myself with as much information as possible.

I did have an extensive workup before the diagnosis but plan to make sure all the possible cancer screenings (ca-125, etc) were done.

Thank you again for your help and all the sites with additional information, you can't have too much. Good luck to you and your friend, so glad she is doing well.


June 21, 2010 - 6:12pm
(reply to lucylu1952)

You are very welcome. Please let us know how you do. Your experiences can help others, especially with a relatively unusual diagnosis.

June 21, 2010 - 6:18pm
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