Prednisone, Weight-Gain/W-Reduction, Your Experience?

[TOBEY32]

Was on Pred for 4 yrs. With doc's permission, went off a good year back. I have been as high as 195 lbs. Have come down to maybe 188 - but it's stopped and has been steady there for a while now.

It's a "different" kind of fat, isn't it? And it totally ate my muscle. Cant lift like I used to in the gym - and that' ok. Just grateful I can still go a couple of times a week. Would like to lose more, but I don't know what to expect, since I've been at such a standstill. Question:

Did you lose most of what you gained if you're no longer on Pred? How?

David

[Pete]

I've been holding at 5 mg for the past three years. Once I get down to 3, I start having roaming joint pains again and my creatinine goes up.

Before I got sick, I weighed 165#. My highest dose of pred was 60 mg. Once it kicked in, I regained the 25# I lost when the disease hit plus about 25 more. I've lost 15# by eating healthier, watching my portion sizes, and exercising. I'm plateaued at 180.

It is a different kind of fat. For me, it's all belly fat and it's harder. I had never had that to any significant degree - maybe a little beer belly, but not like this. Looks like I have a soccer ball in there.

For reference, I'm 5'-11" tall. I'm back into fitness walking to the tune of around 4 miles a day, 5 days a week.

[John S]

I taper to 8 mg today. I was at 235 *and losing) when I started Pred. Now I'm up to 280. I'm hoping to lose some of this weight and the "moonface".

[TOBEY32]

John S. - I DID lose my moon face. And though I haven't lost (yet) as much weight as I would like, I know things could be much, much worse...

[drz]

My story is similar to Pete's. When i got sick with Wegs I lost 25 pounds, some before hospital admission and rest while in the hospital. I was very sick and intubated for several days and spent most of the several weeks in ICU units.

When I was recovered enough to be sent to a rehab hospital and then to a nursing home for more months of rehab they had encourage me to eat everything I could as often as i could since I was very weak and malnourished. One doctor joke I was on a seafood diet. If you see any food, eat it. In three months I regained the 25 pounds I lost and another 20 more from the high dosage of prednisone during this time. I had to snack a lot most nights to try avoid the blood glucose lows as my BG levels ranged from 400 plus in day to lows of 40 at night due to the high pred dosage.

I did eventually lose the moon face mostly and camel hump as I tapered down the pred or as I like to call "pregnantzone" since it give me the pregnant look of around six or seven months along. I still take 5 mg for maintenance.

My weight has remained at the same level since I left the nursing home almost six years ago. Due to insulin usage with insulin pump I have the usual insulin fat rolls some people affectionately call love handles all around my waist but no additional weight. Since I was very thin before I went on insulin years ago most people think I now look better with the extra weight as my BMI is now 26 when it used to be in the teens during my youth.

[Jules]

Today reduced to 2mg after tapering from 30mg for a flare in January.

When battling with weight gain from pred following diagnosis in 2010, my nephrologist told me that even a top athlete wouldn't be able to lose weight whilst on 2 mg - this proved to be the case and once off the pred my first 30lb came off quite quickly without much effort and the final 14lb came off after joining a weight loss group and sticking to it whilst increasing exercise.

The weight gain hasn't been as much this time round, but certainly intend to enroll at same group as soon as I come off the pred in 4 weeks! It's tried and tested for me, so am determined to get back to my pre pred weight and shape by Christmas!

[TOBEY32]

Jules,
At the library for just a moment, but will look closer at your comment next visit.

David

[TOBEY32]

Today reduced to 2mg after tapering from 30mg for a flare in January.

When battling with weight gain from pred following diagnosis in 2010, my nephrologist told me that even a top athlete wouldn't be able to lose weight whilst on 2 mg - this proved to be the case and once off the pred my first 30lb came off quite quickly without much effort and the final 14lb came off after joining a weight loss group and sticking to it whilst increasing exercise.

The weight gain hasn't been as much this time round, but certainly intend to enroll at same group as soon as I come off the pred in 4 weeks! It's tried and tested for me, so am determined to get back to my pre pred weight and shape by Christmas!

EVERYONE must be different then, because I've been at a standstill for a while. I'm a courier, so there's car-sitting, but also do my share of getting out of the vehicle. I feel I watch what/how much I eat, but maybe even more is needed - as well as add'l exercise.

[Jules]

I think you're absolutely right, everyone's journey is different (part and parcel of us all being so 'special'!!��). The additional exercise sounds easy in theory, but is often the last thing on my mind when struggling to make it up a flight of stairs without getting out of breath!

[Pete]

I think you're absolutely right, everyone's journey is different (part and parcel of us all being so 'special'!!��). The additional exercise sounds easy in theory, but is often the last thing on my mind when struggling to make it up a flight of stairs without getting out of breath!

To anyone who is considering taking up an exercise routine: Assuming your doctor sees no medical reason to not exercise, start slow and short. Before I got sick, I walked 4 miles 2-3x weekly and swam 1,500 yards 2x weekly. I did the walks in about 50 minutes and the swims in about 35 minutes. But, after I got sick and felt strong enough to exercise again (about 3 months after dx), I had difficulty walking the 100 yard round trip from my house to the streetcorner. Needless to say, this was a rude reminder of how sick I was. It was scary and frustrating! But, I told myself then to just keep putting one foot in front of the other. Once I could walk a mile with little difficulty (about a month later), I continued to very gradually up the distance. By year end, I was walking 3 miles at a brisk pace 3x weekly.

You can see more experiences on the thread "Any virtual workout buddies out there?"

[elephant]

I have been on and off prednisone most of my life, recently i was put on prednisone 40 mg since June and still on that along with a bunch of other medicines. All I want to do is eat! i have controlled myself by eating tons of vegetables, fruit, whole grain bread and basically try to eat whole , but I do eat one dessert a day. I don't have much energy so I walk around the house ten minutes three times a day.
Prednisone keeps me up at night and causes some crabbiness.

[John S]

I've been re-watching the Breaking Bad series on Netflix. Now I know why Walter White turned evil. Prednisone!

[MikeG-2012]

Prednisone keeps me up at night and causes some crabbiness.

A good number of us used Melatonin when on higher doses of pred. It helped me get some needed sleep!

[TOBEY32]

I have been on pred. during 1 stretch only - it was for 4+ years. Re sleep: I had no problem going to sleep but would wake at 0300 or so, and would often just stay up. Sleeping later returned to regular all night rest.

David