Prednisone help.

Well, I thought I could be off the pred forever, but my immune system is saying nope to that lol.
I am not on it now, but there is a very good chance I will be again soon.
What can I eat that could possibly help make me feel full enough to be able to make it through the near insanity educing cravings?
The last time I tried just not going over my calorie limit, and I was an emotional wreck. I kid you not, I was sobbing in the bathroom, ready to kill anyone I saw, because I was so hungry, and, well, roid-ragey. I gave in and ate- I tried to stick mostly with eggs and yogurt, just to make that feeling stop, but it only helped a little. I only put on 3 lbs the last time, so I guess that's not a total loss. I've managed to lose 2 lbs of that again! I can do this, I'd just love to avoid the roller coaster.
It's a possible side effect of pred- I did not know about it the first time I was on it, I just ate when I was hungry, which was ALL of the time, and put on 70 lbs in the 6 month stretch. Yes, most people are not on it that long, but I have serious medical issues, and pred keeps my joints from becoming deformed to the point of not being able to function as a useful human being. My dr's and I have tried other things, pred is what works to keep me able to dress myself.
ANY tips would be appreciated. I am disabled, so going for a run or something is not an option, but I thankfully am not yet disabled enough that I cannot go for a walk around the block.
I mean, I JOKE about being the ravenous buglbattar beast of Trall, but it's not so funny when I actually think about it.

Not being crapped on for not being able to control a medication side effect would be appreciated too.

Replies

  • Lrdoflamancha
    Lrdoflamancha Posts: 1,280 Member
    Most people who have organ transplants are on Pred for a long time. My SO just had a transplant. But we were fortunate her doner was a good match. So she was on it for just a few days. I wonder if a transplant support group might be a better place to ask this qeuestion?
  • PAV8888
    PAV8888 Posts: 14,235 Member
    Being hungry and eating more is a side effect of prednisone. Make sure you keep an eye on your bone density too.
  • didda1
    didda1 Posts: 71 Member
    PAV8888 wrote: »
    Being hungry and eating more is a side effect of prednisone. Make sure you keep an eye on your bone density too.
    We are keeping a careful eye on that, thank you for mentioning it. That's a really rare side effect that most people do not know about.
  • Essdbee
    Essdbee Posts: 7 Member
    You have my sympathy! The first time I was on steroids I wasn't ready for the 'eat everything within sight' effect, and gained lots and lots. The second time, I changed my calorie goal to lose half a pound a week, and made sure I had plenty of snacking foods in the house - carrots, celery, apples, anything reasonably low in calories. (And I don't want anyone telling me about the calories in apples, thank you ;-) ) I was much better controlled. Get out and about as much as you're able. Drink lots of water or low-calorie drinks.

    And don't beat yourself up if you can't stay in control all the time. We can only ever try our best!

    Good luck, please send a message if you want!

  • didda1
    didda1 Posts: 71 Member
    Thank you for the tip Lrdoflamancha! I will see if I can find some forums like that :)

  • LKArgh
    LKArgh Posts: 5,178 Member
    didda1 wrote: »
    Well, I thought I could be off the pred forever, but my immune system is saying nope to that lol.
    I am not on it now, but there is a very good chance I will be again soon.
    What can I eat that could possibly help make me feel full enough to be able to make it through the near insanity educing cravings?
    The last time I tried just not going over my calorie limit, and I was an emotional wreck. I kid you not, I was sobbing in the bathroom, ready to kill anyone I saw, because I was so hungry, and, well, roid-ragey. I gave in and ate- I tried to stick mostly with eggs and yogurt, just to make that feeling stop, but it only helped a little. I only put on 3 lbs the last time, so I guess that's not a total loss. I've managed to lose 2 lbs of that again! I can do this, I'd just love to avoid the roller coaster.
    It's a possible side effect of pred- I did not know about it the first time I was on it, I just ate when I was hungry, which was ALL of the time, and put on 70 lbs in the 6 month stretch. Yes, most people are not on it that long, but I have serious medical issues, and pred keeps my joints from becoming deformed to the point of not being able to function as a useful human being. My dr's and I have tried other things, pred is what works to keep me able to dress myself.
    ANY tips would be appreciated. I am disabled, so going for a run or something is not an option, but I thankfully am not yet disabled enough that I cannot go for a walk around the block.
    I mean, I JOKE about being the ravenous buglbattar beast of Trall, but it's not so funny when I actually think about it.

    Not being crapped on for not being able to control a medication side effect would be appreciated too.

    I had to on prednisone for short periods here and there (up to a few weeks) and I know how much it sucks :( First, it will cause some weight gain because of water retention, so do not be surprised ot see the the scale go up a bit. Second, and most important, you will need to work with a dietician, or get clear instructions from a dr if you are going to be on it for a while. You will have to avoid salt, and foods high in sodium without adding salt, and you will also need to avoid sugar and count carbs, as if following a diet for diabetes. And add extra sources of calcium in your diet. Or at least this is what the dr demanded of me, and I have a couple of friends with similar experiences. The only good thing about this combination of restrictions, is that it makes it necessary to draftly plan what you eat, to not eat just whatever whenever, so it makes easier not giving in to cravings and not going over the top in calories.
    Here are some general guidelines on how to adapt your diet when usign corticosteroids in general:
    http://www.uwhealth.org/healthfacts/nutrition/5332.html
    Good luck.
  • rgoins374
    rgoins374 Posts: 19 Member
    I feel your pain. I take a low dose of prednisone daily. It makes the difference in whether I can be active or not. When I get high doses in epidural injections, I want to eat everything in sight too. I am experimenting with some different supplements trying to eliminate the daily prednisone or at least move the every other day.
  • DianaLovesCoffee
    DianaLovesCoffee Posts: 398 Member
    I was on some sort of dose of Pred for almost 10 years. Mostly a low 5mg dose but cried every time I flared and needed to boost to 60mg and taper back down. Knowing it would be months to get back down. It is a hard balance. High dose means more energy which means you can burn more calories (but be careful of bones). But definitely roid rage hangry and an emotional mess. For me I had to allow myself to choose between caring for my immune system or caring for my weight. (I chose my immune system.)

    Good news is that with advances in science there are many new meds out there. So for me we used Pred to bring my immune system in balance then a newer med to keep it there. Now I'm able to work on the weight.
  • mollyyy125
    mollyyy125 Posts: 9 Member
    I took a high dose of prednisone consistently for about 3 years, starting when I was 12. Still take a low dose every now and again for flare ups, but nothing significant enough to cause the side effects to kick in. I feel your pain. I look at pictures of myself from those days and I don't even recognize myself. My family and I were mainly concerned with getting my health issues under control so gaining a few pounds was a price we were happily willing to pay at the time, but man did it suck. I would expect that using this app though, and keeping yourself aware of calorie content during the constant hunger will help. Good luck!