I was on Prednisone starting from my diagnosis in late June at 40mg, varying doses down to 5mg, then back up to 30 at one point, then back down to 5, up to 15, then finally a successful taper. I've been off Pred for a month now. I'm on Remicade, 5 infusions so far with my most recent one last Friday.
In the past couple of weeks I've noticed pain in my legs usually only in the ankle area, as well as swelling in my feet and ankles. Something I NEVER had while on Pred. Unfortunately at the same time I'm also very inactive sitting for 8+ hours a day and my weight has ballooned up to 350... I was at 260 in August. In the past to try and get active and build my strength I'd walk 15 minutes a day, but with the leg problems and my weight thats becoming harder to do (I get lower back pain after standing for more than 15 minutes.).
This concerned me and I went to an ER a week ago, they took blood, urine, ekg, x-ray. Blood came back with slightly elevated liver enzymes so they ran another test for Cong. Heart Failure which came back negative. I saw my Primary Care doctor on Monday and had a blood draw done that day. She put me on Furosemide (diuretic) and a Potassium Supplement. Said my heart and lungs sounded fine. Lab work came back the next day got a call saying my cholesterol was high and the liver was still elevated, but the nurse said she'd talk more with me about it next time I see her (5/29) so I'm assuming it's not super bad. She also faxed my lab results to my GI, whom I see on the 11th, so maybe I can get more answers.
I know fluid retention can be a problem DURING prednisone, but I never had issues. I know weight can be a factor, as can my sedinetary lifestyle (thanks crohns!). I'm in a pickle, I need to lose weight, but I can't tolerate a lot of activity at the moment, I'm working on a diet right now, but I'd like to be able to do more.
I hate writing novels like this to get to the point but I like to get as many details as I can, has anyone else experienced similar issues after stopping Prednisone after being on it for months? Or, could this be a result of my continuing Remicade treatment? My GI will have answers on the 11th hopefully but fellow crohnie experiences always help me.