Steroids, RA, And The Battle Of The Bulge: From Size 0 To Size 6/8
As most of us with RA know, steroids can be both a blessing and a curse.
For me, they significantly help my pain, but they make me psychotic and they make me gain weight.
We’ve all heard that one “easy” fix to help RA is to lose weight, because carrying around extra weight can be very hard on the joints. And yet, doctors rely on steroids to mitigate the effects of RA, even though they don’t actually do anything to mitigate the disease, and in fact, they can cause significant joint damage when taken long-term.
I had tried really hard to get off of steroids, but was put back on them last spring in preparation for defending my dissertation, moving to New York, and starting a new academic pursuit and a new life, in a new city.
Prior to now, my highest weight was just under 100 pounds. When I first got sick, I had gone down to about 85 pounds. Today I am a little over 115 pounds.
Gaining 20 pounds in about a year is a lot for anyone, but is certainly a lot on my 4’11” frame, and I don’t like the way I look.
So it’s a really difficult balance – having less pain than normal and tamping down feeling crummy during a time that was extremely stressful and could have easily caused a massive flare – but gaining weight to the point where I feel self-conscious and bad about myself.
I will say, I got a little conned going on steroids this last time. My doctor put me on methylprednisolone as opposed to prednisone, because he said that it tends to have less side-effects than prednisone. He also said that methylprednisolone is used more often in Europe than the United States, but was not really sure why that is.
In fact, I do think in the short-term that the side-effects were less noticeable. In the long-term, however, I think they were the same, if not worse than traditional prednisone.
I saw my new rheumatologist last week, and I am finally starting to taper down on the steroids. Which is another special thing about steroids. You can’t just chuck the bottle across the room and be done with it. So it is going to take me several months to taper off.
I’m both excited and nervous. Excited because I hope that once I am off of the steroids, I can start losing some weight. Because let’s be honest. For as long as it takes to gain the weight, it takes at least twice as long to get it off.
I’ve also hit a workout wall, which has made the steroid weight gain even worse. Most of my New Year’s resolutions have to do wit this: get off steroids, workout more, drink more water, etc.
And there is a measure of self-denial at play here. But the thing is, one of my favorite shows is The Biggest Loser. And I watch that show and I think: I don't eat whole pizzas by myself in one sitting. I don't even eat half pizzas by myself in one sitting. I don't eat pints of ice cream as a relaxing afternoon activity. I try to eat as healthily as possible. And when I do all that and continue to gain weight, that tells me one thing: It has got to be the steroids.
It’s hard because as long as you’re on steroids, it’s really hard to get the weight off. And the worst is gaining weight in places where you didn’t know fat could exist.
So steroids can be great, but with any medication, the physical and emotional side-effects must be weighed against the potential benefits.
And as patients, unless we need a medication or we will die, I think we have to right to refuse medications for any reason. We know what’s worth it to us and what is not. Again, it’s a hard balance, especially as far as steroids are concerned.
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?