I keep two sets of clothes ones for when I am normal and ones for when I have to go on prednisone. My mom made me start it when I was very little because I have had Crohn's since I was 7 and it got so expensive buying me clothes everytime I lost weight. Hope this helps someone a little bit.Been holding 10 mg (almost comfortably) for going on 2 weeks now. Slowest taper/ attempting to taper of my life. going on.. 8 months? Maybe 9? I can't even remember when we initially started trying to get me off of it while playing with/ testing maintenance meds. over the last 2 years. 3rd time on remicade, fingers crossed it'll be 3rd time to successfully come completely off of pred.
Probably won't be tapering any further until after my 3rd remicade loading dose, but it's interesting to see the chipmunk cheeks going away.
I didn't realize just how much pred. gives me an energy boost. Even just a 5 mg. difference wrecks my days with a good 2 week adjustment period. The exhaustion is kicking my butt - if I dont lie down for a nap I find myself nodding off wherever I am and whatever I'm doing. And my naps often become more like full on sleeps unless I set multiple alarms to pull me back out of it.
Oddly enough, it's only since the lower dose that I've been managing to put ON weight, which has been much needed, and am seeing some muscle mass returning. Never thought prednisone could be the issue for why I was struggling so much to gain or hold weight and specifically muscle mass. But apparently it can deplete protein sources on top of everything else it does, wasting away muscle, which of course further compromises bones/ joints. etc. Prednisone - she's one mean bitch.
Getting super excited to be recognizing myself in the mirror again - not just a pair of twiggy legs and arms on a body with a soft, rounded belly yet jutting hip bones and an even softer rounded face with the tip of a nose and little eye peeking back at me.
I did go ahead and say screw it and buy clothes that fit regardless of knowing I'm likely to gain at least another 10 lbs if things keep improving which certainly has helped with getting back stronger positive body-image. I figure of all the things we worry about how our clothes feel/ fit should be the least of it. I was so sick of feeling sick because none of my clothes fit and were elastic waisted, safety pinned, or held up with belts. If I get that 10 lbs I'll go buy some more things that fit and store this latest round of clothes for when they're needed again.