These words from cholesterol medication ads took on horrible new meaning for me last year. This is the story of my journey. (More)

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

(Note: At the present time, there is a debate going on among my various doctors about the diagnosis of dermatomyositis. I won’t know until more tests are done in the next few months.)

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.

My Story

It started when I developed the leg cramps that I’d been warned about while being on Lipitor. As soon as they had happened six times in one week, I was off to the doctor, and was taken off of the Lipitor. And, of course, my cholesterol numbers started getting bad again.

So the mid-July visit to the doctor involved a new prescription for getting the cholesterol numbers back in line. Two weeks later, I looked like I had been exposed to poison ivy – dark red itchy rash all over both of my lower inner arms. The itching couldn’t be controlled with calamine or hydrocortisone, so off I went on the weekend to the local urgent care office.

With just looking at the rash, and a few quick questions which included my mention of a new prescription, the doctor that I saw at the urgent care facility told me that I had scabies, and that I needed to use a prescription treatment, clean the bed linens and clothing thoroughly, and stay away from family and friends for the rest of the weekend until the treatment had time to kill the nasty little critters. I didn’t really think that it was the correct diagnosis, but since I’m not a doctor, I followed instructions and waited for the itching to subside. It didn’t.

After the two weeks that I was supposed to wait to see the scabies cure clear up the rash, I went to see my regular doctor. He also doubted that the rash came from the new prescription, but he gave me a week’s supply of prednisone and told me to stop taking the pills for a week. The rash subsided a little bit in that week, but didn’t really go away. When I went back to my doctor again, he put me back on the cholesterol meds, and said that he didn’t know what else to do with the rash, and that the office would make an appointment with a dermatologist.

By this time, it was getting past mid-August, and I still had an ugly itchy rash that by that time had moved beyond my lower arms to the upper arms, to the backs of my hands and my neckline. When I got word of the dermatologist appointment, I was told that I couldn’t be seen until October 9. The nurse from the office said that she had tried to explain the severity of the itch, but was still told no earlier appointments were open.

Now, the wait for October 9 was on. At first, I was still taking the cholesterol meds, but this time, after a couple of weeks back on it, the rash was really bad, the skin was puffed up and beginning to blister. And the itch? Oh, it was the worst ever. If the doctor hadn’t given me a prescription that combined some itch relief with a sleeping agent, I don’t think I would have gotten any sleep at all. By the first week in September, my husband and son were telling me that they couldn’t take it any more. The cholesterol might cause problems in the future, but the itching was becoming intolerable for the whole family. So I stopped taking the meds again. And still we waited. In that time, I asked another doctor, a nurse, and a couple of pharmacists if the drug could possibly be causing the rash. In all cases I was told that it would not. I almost decided to start taking the medication again, but the thought of my family’s request kept me away from it until after I’d talked to the dermatologist.

During the next four weeks, the rash calmed itself some, but was still visible and was still itching. Also, I was beginning to notice a few other weird things, but didn’t think that they were all related to the rash, except for the exhaustion, which I just thought was a result from the itching. My hair was thinning. I was sometimes having difficulty swallowing when I ate. It seemed to be easier for me to have food or drink “go down the wrong way” and cause bouts of coughing.

Finally, October 9 arrived, and I headed for the dermatologist. I gave her a brief history of my summer, showed her the rash at various parts of my body, and mentioned the cholesterol medication that I thought might be connected to the rash. She went away to check the literature that she had access to, and came back five minutes later with the news that there were indeed reports of skin rashes like I had being connected to the medication. She took a skin sample for a biopsy, stitched it up, and told me to come back in ten days.

The ten days were up on Monday, October 18. Back I went to the dermatologist with the hope that the itching would soon come to an end and I would have relief. The diagnosis took me by surprise. But it didn’t hit while I was still at the dermatologist. It’s not her fault. She gave me the diagnosis – dermatomyositis, told me that I had to stay out of the sun, and wrote a prescription for a steroid cream to put on the rash. However, she added some ominous warnings – that if this rash wasn’t caused by the drug directly, I would have to undergo a barrage of many tests to determine the cause, AND to verify that I don’t have any cancer. She also asked a lot of questions and looked in more detail at other parts of my skin, including my face and scalp. She told me that I needed to come back in four weeks to find out if the dermatomyositis was caused by the cholesterol medication or if it is of unknown origin. Oh, and the biopsy hadn’t just been done at her office. When she saw the results, some of the skin tissue was sent to the University of Iowa Dermatology division to have them determine a diagnosis. Their diagnosis came back the same, so I already had a second opinion.

My current status

Since the dermatologist has diagnosed this, I’ve had sonograms, a new Pap smear, a mammogram, and I’m scheduled to have a colonoscopy later this week. So far, the tests have all been clear.

It seems that this strange disease has a tendency to be associated with cancers during the first couple of years after the diagnosis. In addition, I’ve been to a neurologist and a rheumatologist. The rheumatologist is not sure that he believes the diagnosis, and so I’ll be undergoing even more tests later this month.

In the last couple of months, the muscle problems have really become the primary problem. I’m now taking an NSAID medication to help offset the muscle aches while I await a final diagnosis. There are some days, especially days when I do laundry, when I can hardly move in the evening.

The muscles in my shoulder are noticeably weaker than they were just three months ago. When reaching for dishes from the cupboard, I can now only lift two or three plates at a time. I’ve managed to break a plate and a large bowl both in the last couple of months. Getting up from a sitting position can take me several seconds and I usually have to rest for a few seconds after I’m upright to ensure that I’m going to be able to support my weight. Going downstairs isn’t a problem, but having to come back upstairs can be a real challenge, especially the third of fourth time that I do it in a day.

Tomorrow, I’ll be looking at the disease itself and what is known about it at this time.