My Statin Intolerance Journey: Not Every Patient Fits the Mold

Several years after my myocardial infarction (heart attack) in 2001, I was diagnosed with high cholesterol and had high triglycerides. My primary care doctor (PCP) put me on Lipitor for the cholesterol.

After about 3 months of Lipitor, I started having cramping pain in my lower legs on the outside edges.

Experiencing potential side effects

I saw my PCP to report the symptoms. My PCP stated statins only affected the large muscle groups, and this was not a statin issue. He recommended stretching before exercise to "take care of it."

I continued the Lipitor and did stretching before walking or bike riding. Nothing seemed to help, and it felt like my muscles were always cramping. It was painful when walking and when resting.

Switching medications did not help

When I saw my cardiologist, he agreed that it might not be statin-related but offered to switch to a different type of statin that was "well-tolerated." There was a delay in getting the medication due to insurance approval, but I finally started on Crestor.

Guess what? The pain and cramping did not get better. It was more of the same. Did I mention that I am the poster child for unusual adverse reactions to medication?

Another medication change

On my return visit with the cardiologist, he switched me to simvastatin, which he thought might help. He still was not convinced it was a statin-related issue.

You guessed it. It did not work. I still had painful cramping that required massage just to be able to sleep. I was desperate to get relief. After 2 years of try-this-and-try-that, I simply was not willing to try another statin.

Stopping the statin improved my symptoms

As a registered nurse (RN), I never recommend stopping a medication without discussing it with your medical provider. As a patient, I never had done so. I simply wanted relief.

Two weeks before my next cardiologist appointment, I stopped taking my statin to see what happened.

After 5 days, my leg muscles started to relax. I changed nothing else in my routine.

Ten days later, I no longer had pain.

Advocating for myself at my cardiology appointment

When I saw the cardiologist, I admitted what I had done and shared my results. After examining my lower legs, he was still not convinced.

At this point, I got very frustrated. What proceeded went something like this: "Just because my symptoms don’t meet the norm does not make them invalid. I have changed nothing else in my routine. You may not think this is statin-related, but I do. I will NOT take any more statins! There must be something else we can do.”

My cardiologist was so surprised because I am usually a compliant and joyful person.

Statin intolerance greatly affected my life

The cardiologist sat down and apologized for not understanding how much this had affected my life.

He looked at my labs and said he had another option. Fenofibrate is also used to decrease triglycerides and high cholesterol. Although not everyone can take it, I was willing to try.

I was able to tolerate fenofibrate for about 2 years, after which the muscle cramps returned. This time, I knew the cause and let my cardiologist know that I was stopping the medication.

Self-advocacy is essential

Advocating for yourself is essential to getting the care you need. If you are like me, you don’t fit the "traditional patient" mold. Being honest and descriptive with your provider benefits both of you.