Do you recognize those words? They’re part of the Lipitor commercials that are used every day on almost every channel, it seems. (More)

For a long time, they were just the words that the maker of Lipitor had to provide in their commercials as part of their side effects. For me, those words took a horrible new meaning a few months ago. The words are usually interpreted as meaning a condition called rhabdomyolysis. But it is also possible that there may be even more rare conditions involving the muscle pain and/or weakness. One of those other “rare but serious” conditions is called dermatomyositis.

Yesterday, I talked about the last few months that led me to get to know more about dermatomyositis.

Note: At the present time, there is a debate going on among my various doctors about the diagnosis of dermatomyositis. (The dermatologist is convinced that it IS dermatomyositis based upon the results of a skin biopsy. Some agree that the symptoms do match the diagnosis, but think that other conditions still need to be ruled out. Others of my current health care team may not be convinced of the diagnosis until a muscle biopsy has been performed.)

Dermatomyositis

Dermatomyositis is a rare disease that is covered by the National Organization of Rare Disorders (NORD). According to the documentation I’ve been able to locate, between five and ten people in a million are diagnosed with this disease each year.

So what is Dermatomyositis(DM)? It’s a disease that affects both the skin and muscles. The rash I had last summer is usually the first sign of the disease. According to rheumatologist, however, the rash I had isn’t the usual rash associated with the disease. I find this interesting since the dermatologist is the doctor who knows the rashes and diagnosed this. Besides the rash, there can be hair loss associated with this.

The muscles that are impacted the most are the trunk (hence the occasional difficulty with swallowing), the shoulders, and the hips. In addition, there can be an incredible amount of exhaustion that sometimes accompanies the muscle weakness and aches. Finally, I’ve read that there can be lung problems associated with the disease.

Various cancers can accompany the onset of the disease when it strikes in adulthood. That’s why I’ve had to undergo x-rays, sonograms, Pap Smears, a mammogram, and will be having a colonoscopy later this week. So far, the results of these tests have all been negative.

The cause of this is unknown. The disease is often associated with auto-immune disorders, in that it appears that something triggers the immune system to attack the skin and/or muscles.  Some sources strongly believe that the statin medications used to reduce cholesterol may well act as such a trigger.

The ultimate test used to diagnose the condition is a muscle biopsy. Because it is an invasive procedure, my rheumatologist is suggesting that I use other tests to possibly find other causes of my symptoms. My next scheduled test is called electromyography (EMG), which will be done by my neurologist. If that shows a normal result, it would rule out DM, as well as some other disorders. If it is abnormal, there will be more tests to follow.

If this preliminary diagnosis holds up, how will it be treated? Probably to start with, I’ll be put on a fairly heavy dosage of prednisone. As the muscle aches and weakness come under control, there will probably be an attempt to wean me off of the prednisone. According to many of the online contacts I have made with people who have DM, there comes a point when the prednisone can’t be lowered further. At that point, the next step seems to be to add a dosage of azathioprine or methotrexate, drugs that help the Prednisone keep the immune system from attacking the body. There are a few other treatments that could be used, but most of the contacts I have made are able to keep it under control with some combination of these medications.

Is there any other good news? Well, in the last thirty years or so, there have been a lot of research done, and this has allowed for earlier detection, and the fatality rate is no longer an awful 50%, but is now 10% or less. Most of the fatalities that still occur are related to the associated cancers or lung complications. Also, with prednisone and the other associated drugs, daily living can become almost normal. There aren’t a lot of people with this diagnosis, but there is a fairly active forum that I’ve found for having discussions about what is going on.

Final Comment

I am thankful that due to Mr. W’s job, we have a good insurance plan that has paid for almost all of the tests and drugs that I’ve had to use so far. There have been no hassle so far with the insurance company in covering any of the expenses that have come up. No individual test/appointment has cost me more than $50 so far, except for the cost of the skin biopsy. If it is diagnosed, and Prednisone is prescribed, that won’t be too bad either. Azathioprine is another matter. The Younger W is already taking this drug for a condition that he has, and with insurance, the cost to us is $40 per month. Without the insurance, we’d be facing the cost of $300 per month. With two of us taking this medication, the cost to our family would jump to to $600 per month if we didn’t have that insurance.

I can’t imagine having this condition and not having the insurance to cover the tests and treatments that I’ve gone through and am still facing.

This is where I associate this series with the BPI Campus values, especially that each person matters … equally. The fact that I’m lucky enough to have a partner who has good insurance and has not dropped me as a result of this stuff is great. The fact that not everyone in the country is in the same position should not  be acceptable. The fact that we are in the midst of discussions on turning back small health care improvements means that we have to be able to bring this existing inequality to Fred’s attention.

Take it from me, you never know when something totally unexpected and serious can occur. This kind of thing isn’t really something that you can plan for. It’s a five chances in a million kind of thing, but if you are one of those five in a million, should you have to face the “rare but serious” condition without the health care needed?