life is still a rollercoaster after 3 yrs!

[Sangye]

That pred weight is just awful. Because my activity level is still extremely limited, I haven't budged it. It's a visual reminder of how this whole thing feels like someone hijacked my body. I wonder where they're hiding the old one. I'd like it back if anyone happens to find it in an airport locker or something.

[DuaneHart]

I was thinking about just taking a drive and see if I can find mine lying along side the road or in a ditch somewhere!

[Luce]

Duane, the pred does get easier as and when you are able to taper, honestly.

I haven't lost any weight but the sweating, leg cramps and being wide awake at 3am have virtually disappeared now I'm down to 5mg of pred.
I still think I have a small amount of moon face and a slight hump at the back of neck/top of my shoulders, but my partner says he cannot see it.

[Terri]

[QUOTE=DuaneHart;5574]
If I can just get rid of the extra 45 lbs I've gained since being on the pred would really help me feel better.

Believe me DuaneHart you are not alone.
I've been saying the same thing for two years now.
Just when I get down on the pred and start to lose a few pounds....along comes a flare and I have to go back up on the dosage.
At the present I am down to 7.5 mg pred and 8x2.5 methetrexate once a week. My moon face is finally starting to phase out some.
Hang in there. It will get better.

[coffeelover]

Just when you look at your self in the mirror and think "not bad" moon face is lessened some one bursts your bubble!
I decided to go to church choir practice after 1 1/2 year absence (due to trach) and one of the members said to me after she asked me what my illness was and I quote "I thought there was something wrong with you because your puffy cheeks". ARGHHHHH! You can't win.
Oh Yeah...I am back and still on 10 mg of pred. Rheumy not ready to lower that dose yet.
coffeelover

[Sangye]

It's always so difficult trying to explain pred to people. I can't blame them, really. The only type of steroids most people know about are anabolic steroids, that put muscle on you. Hard to explain that corticosteroids make you lose muscle and gain fat.

I'm convinced that unless someone has been on them, they can't really understand the degree to which they stimulate the appetite and convince your brain you're actually starving.

Even though I know I couldn't have, I still look back on my days on high dose pred and think I could have controlled myself better.

[crackers]

sangye when i was on a high dosage of pred control was something that didn't exist.i was an eating machine especially chocolate bars and cakes,something i'd never previously eaten.i've been on 10mg since june of this year and my eating habits are now back to normal.in fact they are probably healthier.i've lost 7 pounds since the reduction and sue reckons i am beginning to look my old self again.i seemed to put on 50 pounds overnight but it's a lot slower coming off.
john.

[Sangye]

I even ate in the middle of the night--something I'd always been repulsed by. Thankfully that stopped as the dosage dropped. I got about 10 lbs off without much problem, but not a single pound since. It just doesn't budge.

[Jack]

You are obviously not ill enough. Everyone knows that ill people are thin and pale!

I'd say there was nothing much wrong with you.

[crackers]

that's very true jack.people have told me i look better now than before i was ill so i must be imagining all this.
john.