To answer your questions, I have been on steroids everyday for over 11 years now. I have never not taken any, I've only managed to get down to about 8mg of Medrol and that only lasted maybe a week. So yes, I've had plenty of weight gain.
I have several other health issues that are very serious, so my ability to work out everyday during the week is impossible. I have a bad case of pulmonary hypertension, pleurisy chronically, pericarditis chronically, I have RA and Fibromyalgia and Mylodysplastic Syndrome, gastroparesis, blood clots, and anemia serious of enough that currently I'm requiring blood transfusion every other week to every week. So my fatigue is thru the roof right now. I'm on oxygen 24/7, that being said I do go to pulmonary rehab twice a week. I walk on a tread mill, lifts 5 lb weights, and ride an stationary bike. Of course, the whole time I'm monitored with oxygen saturation, heart rate and they give 5 liters of oxygen while I'm exercising.
From taking the steroids for so long I've developed some serious side effects. I have a huge moon face, a hump on my back, a fat pad on the side of my neck, my skin is thin, I bruise easy, I have osteoporosis really really bad. I also, have the big tummy and the ugly looking stretch marks. Yet, my legs are really skinny and I have no butt LOL.
I try to eat as healthy as I can. I try to avoid carbs, but I crave them. I retain a lot of water so I'm on a water pill daily. I've been married to the same man for 28 years. I can say that I am embarrassed at how I look, and I feel like I'm physically not appealing to him. Mind you he doesn't do or say anything to make me feel that way. I feel like a huge burden to my husband and my almost 20 year old daughter. I nearly died last summer, and have had 3 more close calls. My daughter is afraid to be left alone with me right now, she's the one who found me last summer. I missed her high school graduation because of it. I'm very limited in what I can and can't do.
So to answer your question how do I handle things. I try to take it one day at a time, some days it's a minute at a time. Do I have times when I wished I wasn't alive, you bet. I keep going because I know my family would miss me dearly. I have only one child and she needs me around. I do take cymbalta daily, mostly for my fibro but it does give an added benefit of helping with depression. Day to day activities are very difficult for me so I just do what I can, and when I can't I rest. There are many days I stay in bed sleeping the day away. I suffer with really bad pain and I'm on a lot of meds that make me sleepy. My current dose of medrol has been where it's at for the last 6 months. I see no hope in lowering it anytime soon.
I hope I answered you're questions. I probably gave you to much info and vented to much. I just wanted you to know that it is possible to push forward and continue on. Even if you feel like giving up you just have to have hope, for me faith in a higher power and people I love to help me to continue on.
If you have anymore questions, I'd be happy to answer them. Hang in there Careyboy, lupus can be difficult to deal with, but it's not, in most cases, a death sentence by any means. This is a great place to get support we are like family here, so come anytime you need a shoulder. Also, I may suggest finding a therapist that deals with patients with chronic illnesses may help. Sorry for the long post, please keep me posted on how you're doing.