Hi,

My son is 10 and was diagnosed with addisons when he was 3, he is on hydrocortisone and fludrocortisone, he's not the average weight of 10 year old according to the consultants but he is quite muscley for his age due to the jujitsu and kids in the gym he does, the longest time his meds were doubled was in november and december, november he was in hospital for 7 days everything given through iv then home for 10 days on double doses and then back in for 3 days iv again, in december he had chicken pox and was managed at home on double doses, his last visit to great ormand street in jan the consultnt said his weight had gone up, but dont know if that ws due to the extra doses, they just said to keep an eye on his weight, i suspect that it was due to double dosing as his eating and fitness patterns hasn't changed untill then, obviously when he was ill he couldnt go to his jujitsu and kids in the gym classes so that didnt help. some consultants say some weight gain is to be expected other say it isnt because it is replacement theropy. my son hasnt lost the weight he has put on but hasnt gained any either since.

kellers

Hello Vanyel,

I put eighteen pounds in a month and a half. I'm always hungry due to steroids. My doctor told me to take two walks a day and close the kitchen at seven pm. Hard to do when you feel hungry. Hard to take walks when you do not feel good.

Yeah, no kidding. I can't stay out of the food. I can't walk either. My ankle is too painful. Its all I can do to get through what I have to do to work. I can't go for walks anymore. That is really upsetting me. I love to hike ad walk with my dogs.

I gained over 60 pounds in five months when I was first diagnosed and put on steroids. I am still adjusting, but now that I am on a lower dose I have lost 22 pounds since January. You have to ask yourself "Are you really hungry or do you just want to eat out of habit"?

Bird,
I tend to eat out of boredom, frustration, anxiety, depression - I just eat. Its terrible. I blame the steroids but don't really know if that's the problem. I had surgery on my ankle in december and have been unable to get any real exercise since. It hurts too much. Moving at all hurts too much. I wish the weight would go away.

Vanyel

Eating out of habit is hard to break. I think about eating all of the time since starting the steroids. It has been better since I have lowered my doses ( I take 20mg hydro when I wake up, 20mg at 11:00, 10, mg at 15:00 and 5mg of prednisone at bedtime). The Hydrocortisone only works for about 4 hours for me. I can't walk when I wake-up without the longer lasting prednisone. I think finding the right timing of the meds helps manage cravings. Try to add protein and fiber and cut-out the carbs.

Bird,
Wow, you take more steroid than I do. I tried using hydrocortisone but it didn't seem to work unless I took really high doses. So we switched me to prednisone. I take 10 mg in the AM, along with 10 mg of hydrocortisone, and 5mg of Pred in the evening. I was on much higher dose over the winter and that's when I put the weight on. I'm trying to keep the dose down now. I got the puffy face and all the fat from too much. But i still don't feel much better at all. I'm always tired and washed out, still get orthostatic, still feel really weak and unable to do anything physically. Its rotten. I'm trying to eat better and cut out a lot of the junk, but I do like comfort food. Life is so damn miserable at the moment, food is one of the few pleasures left. And I need to cut it out too. Who made up this world?

My current dose is way down from when I started and I have only been on this level for about 3 weeks. I don't know if I can go any lower at this time. I try to make one change at time and give it time to work. While I still have fatigue, most of my current issues are joint pain, so I am trying glucosamine and condroytin before I do anything else. I may need to increase steroids if this does not work. When I started I was on Dexamethasone and thats when the weight gain started, but I fell OK. I agree that hydro does not work as well but is closer to the natural hormone. Unfortunately it gives me a skin condition. I still crave food, but I now recognize that I am not hungry just craving.