Venting; remicade, pred side effects, etc

Hey everyone,

Just a look at my day which is nothing compared to some of you who are having really bad flares right now. But for me today has been tough. Just a little venting.

-Currently, flaring and have been on prednisone 40mg for about a week now. Side effects, moon face, increased appetite thus weight gain (sucks), ...BUT the pred has slowly been doing it's job.

-Today had my regularly scheduled remicade infusion. 3-4hrs sitting in the chair, was so bored today. AND I was unable to fit in my morning exercise, which I haven't missed in over 6months. Even if I am flaring, every morning I do something. So I was a little depressed and out of sorts.

-Evening: somehow managed to drag my sore, tired body to the gym for one lousy hour of cardio. Despite my legs feeling like they'd just ran a marathon even though I've done nothing but sit all day.

-Been eating like crazy because the stupid pred increasing my appetitie.

So between that and the remicade infusion + IV fluids, I'm dreading getting on the scale in the morning. Which I do regardless of what is going on. Even though I know a lot of it will be because the infusion. Still gets me depressed.  

-It is always such a tough time for me during a flare because all the foods I would normally NOT eat in order to keep my weight down (still trying to lose last 10lbs to goal weight) I NEED to eat.. applesausce, Ritz crackers/saltines, BRAT type of foods that work for me, to help stop me up, etc. UGH! and then trying to balance things out once I am out of flare with wanting to eat lots of fruits and vegetables, BUT trying to do so without causing a flare. So tricky.

IF anyone has actually read this and can relate..would love to hear I'm not alone. Would love to hear that others have felt the same way. any suggestions one might have to encourage me a little. cool.

I know exactly what you mean having to get on here and just vent a bit, feels good to just kinda throw it all out there to people who can understand what your going through. Im on 40 mg of pred at the moment to and have been for a couple weeks while waiting to set a date for surgery. Its pretty much the only thing giving me enough energy to move even though its barely helping. I hate this stuff! At the point the prednisone side effects are kicking in fully for me, massive insomnia, mood swings, whole body feels like its shaking at times (especially my hands), and my appetite is crazy! I've lost a lot of weight due to the flare im in so im not worried about gaining it back, but my body is so messed up right now that it hurts to eat, so im either stuck with hunger pains or eating pains!! The whole not being able to eat what you know is good for you drives me nuts too, I live for salads and most green vegetables that are hard to digest...i havnt been able to eat anything like that in months though because of this flare. I cant believe you find the energy to go to the gym after a day with a remicade infusion, when i was getting them i usually spent the rest of the day so tired i couldnt get off the couch! But hopefully the prednisone is working for you and before you know it you will be off of that horrible/amazing drug :)

surferchick, sorry to hear of your troubles.  it is a story i can so relate to as well.  i love eating healthy: fruits and veggies.  i have worked hard to look good. but pred can take all that away very quickly.  and i have to be careful not to eat too many veggies/the wrong veggies.  fruit is hard for me to eat.  thus, i end up eating more carbs.  i can so relate.  and i sympathize with you.  the fatigue is difficult too.  physical activity is a struggle.  i understand.  i hope you can get off the pred soon and feel better.  all i can suggest is to take one day at a time and tell yourself you are doing this to get well.  it sucks tho, i know :(  hang in there!

and MAJOR KUDOS to you for keeping the exercise up even in the midst of your flare! Missing one day is not the end of the world :)