I got another rude reminder of how challenging and risky fibromyalgia treatment can be. Over the weekend a friend wound up in the hospital due to side effects from the drug Savella.
About a year ago I discovered that Savella causes high blood pressure in about 20% of the people who take it. Given I already have some weirdness with my heart courtesy of dysautonomia, like an elevated pulse and wonky blood pressure, my neurologist and I decided to pass on trying this particular drug.
My friend obviously decided to try it when her doctor suggested it. I learned from her posts on Facebook that she experienced a resting heart rate of 120, which prompted an admission to the hospital for cardiac monitoring.
Last year, another friend who lives with chronic fatigue and fibromyalgia experienced serotonin syndrome from the combination of her medications and had to be weaned off them. It was a painful and traumatic experience for her, which I know is huge understatement for how scary and disruptive this experience was for her.
Even I have landed in the Emergency Room because of medication side effects. Seems that the prescription sleep aid Lunesta went from being helpful to keeping me up all night over the course of a few years. I went to the ER when I felt agitated after taking it the last and final time because I was concerned this was a serious adverse reaction. After being given several different medications to treat the side effects, I was finally able to go home and fall sleep some 5 hours after taking it...
Which brings me to some truths about the whole subject of taking medications to treat fibromyalgia symptoms:
- Experts currently estimate that medications only help 30 to 40% of people living with fibromyalgia
- Only three medications are FDA approved for treating fibromyalgia: Lyrica, Cymbalta and Savella
- Finding medications that will work for you can involve a lot of trial-and-error and patience
- Many medications used to treat fibromyalgia symptoms are prescribed off-label, meaning that these medications are not specifically FDA approved for use in patients with fibromyalgia
- Fibromyalgia can make people even more sensitive to medications, which may translate into more side effects and/or the need for smaller than normal doses
- Even when you find a medication that proves helpful, it may become less effective over time
- Most medications are only studied in short-term trials, which means there is a lack of information about which medications work best for fibromyalgia in the long haul
So I can't help but wonder what your experiences have been with medication side effects and if they have affected your willingness to try a new medication when you doctor suggests one.
Share your thoughts and advice on this subject here or over on the OMA&P! Facebook page. I am curious to hear what you have to say and look forward to reading all your comments.