Taper Town: The Blame Game
A tombstone bearing the epithet, “I told you I was sick,” was one of my grandfather’s favorite jokes. But this lament is no joke for people with autoimmune diseases.
Our lives are often riddled with odd symptoms and bandaid solutions. The thyroid guy doesn’t talk to the gynecologist. The gastroenterologist doesn’t always send notes to the family doctor. Doctors don’t believe our pain.
Then, like a blessing, we get sick enough to warrant diagnoses. Pieces of the puzzle click together.
Congratulations! It’s lupus! Or scleroderma! Or Sjogren’s syndrome! Or all three! I’m a non-functioning heap of misery with multi-system disease involvement, but yay! I have a diagnosis.
I told you I was sick. That’s when the blame game began.
When I have joint pain, I blame lupus. Insomnia? Prednisone for lupus. Nausea? Lupus attacked my digestive system. Headache? Rash? Fever? Lupus. Sniffles? Yeah, that’s lupus, too.
But it’s not all lupus. My rheumatologist reminds me: You can get anything a person without lupus gets. (That includes aging, by the way.)
It is day 20 of my prednisone taper. I’m down from 5 mg a day to a pattern of 5 mg, 4.5 mg, 4.5 mg. I ache and throb. My joints are stiff and lock at the wrong moments. My hair is falling out.
And I don’t know what to blame.
Impending lupus flare? Cold weather? Prednisone withdrawal?
There is no way to know.
Despite the increase in symptoms, my energy has been good. My appetite is up. It’s the holidays. And I’ve got no clear scapegoat. So hold off on that tombstone: I’ll live to taper another day.
For information from John’s Hopkins on the steroids used to treat autoimmune diseases like lupus, CLICK HERE.