Nov 28, 2012 - 6:05 pm
After 2 1/2 years navigating the turbulent waters of mRCC I found my way to CSN. I hear you all are a great group and might be able to offer some suggestions for me. Hubby is currently on BMS936558 + Votriet trial. Responding well to the meds but hit a snag in Oct when he developed pnuemonitis. Took a while, and some doozy doses of steroids to get that resolved but it looks like we are finally out of the woods on that. My question is how to deal with the steriods. He started with a prednisone taper but when that didn't do anything to help the lungs he was switched to 74mgs daily of dexamethasone (truly the drug from hell) for about 10 days. That knocked out the pneumonitis but whacked out his liver so he's now on 400mgs (no that's not a typo) of prednisone. He'll start to taper down next week but it will be a 6 week process. I don't know exactly how much weight he's gained but would guess he's picked up about 20 lbs in the last month (polished off a half gallon of ice cream on his own last night) and is dealing with a number of other side effects. I can deal with the eating but the mood swings are pretty rough to handle. Has anyone had experience with these high steroid doses? Have any suggestions on how to address the mood swings? Ideas on how to help him sleep? With only one kidney and elevated liver enzymes the docs don't really want him on Xanax or Ambien. Lack of sleep probably not helping the mood swings either!