That’s very true, and the medications work very well for some, probably most people.

There was an article in The Atlantic last year explaining that researchers had stumbled upon a possible explanation for why statins work so well for some but cause a host of problems for others. I just wish we were given all the facts, or that my father’s doctor would have listened. Most providers don’t believe either of us when we explain that we have central sensitization (which is a real condition) that contributed to medication sensitivity. For that reason whenever possible, medications should be started slowly and increased slowly. It’s not uncommon but not we’ll know.

Instead what happened is he was started at the highest dose possible, which his care team now believes triggered an autoimmune response, which is a very rare side effect, except my dad has a strong family history of autoimmune conditions. That resulted in him developing Polymyalgia Rheumatica, which often occurs with a related condition called Giant Cell Arteritis (GCA), which is a high risk factor for stroke because it causes inflammation of the temporal arteries. Both conditions are already difficult to diagnosis, and the diagnosis was delayed for weeks because everyone thought we were crazy (including his PCP).

And then he had a stroke. And then he was believed but now he has permanent disability and will never be the same.

It may have ended the same way, but if we had been educated about the risks (i.e. about the autoimmune risk, and the same applies to rhabdo), or if the doctor would have been more open to starting at a lower instead of the maximum dose possible, we might have made different decisions.

We didn’t totally give up on statins, but while in hospital recovering from the stroke, they started him on the max dose of Crestor, but then he experienced acute liver damage, which is a known side effect of Crestor. Because it’s so hard for him to recover from side effects—it sets back his rehab for weeks—we just had to make a decision that we need to accept the risks of going without the statin for quality of life purposes. I wish it would have worked out.

I know it’s a highly specific and rare situation. But my dad wasn’t given the opportunity to make the best decision for his specific situation, while fully informed.