I was at my rheumatology appointment, letting my doctor know that things are starting to get a bit worse. Or, more correctly, I let him know that symptoms that had gotten worse before my previous appointment had stayed the same (and had not improved).
My rheumatoid arthritis is in my hands and feet. I work from home. This means I don’t have to worry about how I’m going to walk to work, or safely drive, with aching feet. My hands, however, are a different story.
I’m a writer. I’ve been doing freelance writing for about six years now. When my hands ache and hurt, and my finger joints swell up, it makes it impossible for me to write. I’m no longer able to keep up with the work I’ve gotten (and hope to keep).
Previously, my rheumatologist prescribed a drug for me that he thought would help. The drug was originally designed to help with a completely different disease but somehow works for rheumatoid arthritis, too. Neither one of us knew that it contained gluten. After a week (or was it two weeks?) of hellishly bad symptoms, I decided to stop taking the drug.
This time, he had a different drug for me to try. It was originally designed to prevent malaria. My doctor said they don’t know why it works on rheumatoid arthritis, or how it works on it – but that it somehow does.
Side effects include stomach cramps and diarrhea. I figured I could cope with that. But, there’s another side effect that was a dealbreaker for me. People who take this drug risk a small chance of blindness.
The drug does something to people’s retinas (if I remember correctly). Not everyone who takes this drug loses their eyesight – but a small percentage of people do. Taking this drug requires me to start seeing an ophthalmologist who can periodically check my retinas to see how much damage had been done by the drug.
People who stop taking the drug, after experiencing some vision loss – DO NOT get their eyesight back. My doctor tried to reassure me that, in the 30 years he has been practicing, he’s never had a patient go blind from this drug.
Here’s the thing, a small percentage of people go blind from this particular drug – which doesn’t sound like much risk – unless YOU are the person who hits the misfortune lottery and lose your eye sight.
I’m having trouble writing because of my rheumatoid arthritis. Going blind from the drug I take to cope with symptoms of RA is NOT going to improve my ability to get my writing work done. I decided not to take the drug (or even pick up the prescription).
This appointment occurred shortly after the 2016 presidential election. Donald Trump was named the president-elect, and he has made it clear he wants to repeal “Obamacare”.
“Obamacare” is the only way I am able to afford health insurance coverage.
Now is definitely not the time to start a new prescription-only drug, that requires me to make several appointments with an ophthalmologist, in an effort to determine if a “small chance of blindness” turned into a big risk of losing my sight.
I’m learning how to manage rheumatoid arthritis (and fibromyalgia, which my rheumatologist shrugs at and knows not what to do with). I’m pretty good at managing my severe allergies (except during the two pollen seasons every year when it’s too hard to cope with). This new drug would have given me yet another “disease” to manage. I decided the easiest way to avoid a chance of blindness from a drug was to simply not take it.