New Drugs, New Doctor, New Blues

Tanya,
As a kid, even when I did eat calorie-laden foods, I couldn’t keep weight on. I was considered underweight for much of my childhood. I could out eat my 2 best friends combined and I was also known to be able to eat more than my Mom and then BF. Now, it was only when I wasn’t in a flare that I could do that. During a flare, it was hard for me to even force myself to eat toast. For some reason I would eat toast when it had a combo of peanut butter and Cheez Whiz, a combo I still like when flaring. It’s not so odd really as people eat pb on cheese crackers!

It wasn’t until after high school and getting married and starting Depo-Provera that I was over 100lbs. Which for my 5’3″ thin boned frame is still kinda low. Each time I got the Depo-Provera I gained a bit of weight and finally got to 115lbs which is where I felt less joint strain because of weight. I still looked ill and underweight. It wasn’t until I hit about 120-125lbs that people said I looked like I was a healthy even. But unfortunately (in some ways) I started seeing a rheumy again and started pred as well as other meds. I went from the healthy looking 120 to 198lbs over the course of a few years. Yet, my appetite was worse than ever. I literally was forcing myself to eat. And because at the time I couldn’t swallow pills, I was eating a few tablespoons of yogurt or pudding 4-6 times a day and some days, that’s all I’d eat.

When I got deathly ill (Jan 2009)and spent 11 mo in the hosp. with the first 4 mo where I was really out of it and don’t remember anything, I went from that 198 which was awful to between 90 and 95lbs. They used NG tubes to give me nutrients, they put in a feeding tube and it came out, then they put in a second feeding tube and it stayed in. Shortly after that I actually got my appetite back to a small extent. I left the hosp and went to a nursing home in Nov 2009 and had gotten up to 112lbs the day I checked into the nursing home. My weight bounced up and down by 5-10lbs a month which is normal for me. One month I lost 10lbs and that triggered a weekly weigh in. Which was a waste of time as I told them I’d been in a major flare and it’d been broken by use of a shot of Decadron and that in the next weeks my weight would bounce back. And I was right, it did. And then we put me back on daily pred because it was getting to be a monthly thing with getting a systemic shot. And after that, my weight climbed slowly but steadily. I was around 155 or so when I left there in Nov. I was getting some more exercise than I am now with an hr of PT 4 days a week which was part of learning to walk again since when I got sick I’d fallen and was unable to walk or stand even and it just worsened because of joint contractures that occurred when I was in the hosp. So the PT was one way of forcing me to be active. And since I’ve left the nursing home in Nov 2011, and am not in PT, I have steadily gained weight despite not eating much and being in a constant flare since about Feb. That’s one thing about the nursing home, I’d have long had a systemic shot before now. I am considering calling my NP who does my rheumy care even though I don’t have an appt until Sept.

But, my point in sharing all of that is I was always underweight growing up and my docs told my Mom it was an effect of JRA flares. You’re fighting the flare and your desire for food is not there because your body is just too occupied with the flare. It’s weird, you’d think your body is fighting a flare and would need the energy to do so and would increase your desire to eat. But he said it was very common for flares to cause weight loss. You’d also think since flares cause less movement, you’d gain from not being active.