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Decadron and Weight Gain

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Posted 3/19/2013 12:51 PM (GMT 0)
I hope it's okay to ask this question since I didn't see any recently (but may have missed them). I have been on Decadron 4 mg for 2 x a day and already look like the "bippity boppity boo fairy" from Cinderella! Is anyone aware of a diet (such as lots of crunchers on celery, carrots, or anything that can fill an oral opening at the moment) without completely destroying my entire physical self-image!

I'm already feeling really self-conscious of it and want to proactively go get some foods/menu plans to try to combat it all before it gets worse out of control! Also, should I be asking my doctor to put me on something other than decadron at this point? She said we were going to do this for 10 days, and then go from that to some other steroid/immunosuppressant...

Thanks all,
Nicki
Posted 3/19/2013 1:09 PM (GMT 0)
I am not knowledgeable about decadron but the symptoms you describe seem typical steroid symptoms I'm afraid. Steroids have a sort of triple effect which causes weight gain. They slow your metabolism down so you actually need fewer calories then you did before, then they give you an amazing appetite and finally if that wasn't enough they cause more of the excess calories to be laid down as excess fat.

The only thing I can recommend is to get healthy food in and put a lock on the fridge! Your ideas about carrots etc are great.

Remember some symptoms such as the round face are caused by fluid retention and that does go when the dose is reduced. Immunosuppressants cause less weight gain but they do take a few weeks to work.

Budesonide causes fewer side effects because the steroid is much more contained in the liver and small intestine and far less is absorbed by the rest of the body to cause side effects. But remember that also means that it doesn't have any, or only minimal, effect on joint symptoms as the steroid doesn't reach them. (I seem to remember from your previous posts that joint problems were a big issue for you).

Sorry there is no magic wand.

When are you seeing your hep again?

Ann
Posted 3/19/2013 1:23 PM (GMT 0)
My family doctor is getting some appointments set up for me at the moment, so no real dates other than seeing her again next week. I am having trouble concentrating on school or anything with all this going on right now, feeling somewhat depressed, and the steroids now seem to be making me more swollen and more pain than before. I mean, they are helping, but just not as immediately the way they did before the first year.

I guess I'll get a fridge lock and give the key to my husband--he's pretty fair about things! :-)

I did get my new wheelchair on Saturday, which may help a lot now to get outside and see other people instead of being in the same 4 walls of this bedroom for months!

I will ask my doctor about the immunosuppressant you wrote about. You're right that I have a lot of issues with the bones/joints areas, but maybe they'll go away soon and I just need to be more patient!

Thank you so much for all your support and encouragement!!!

Nicki
Posted 3/19/2013 4:24 PM (GMT 0)

Nicki,

I'd also add to watch your sodium/salt intake.  That doesn't help with fluid retention.  So if you eat any canned veggies, be sure to get the 'no sodium added' variety.  It's better to stick with fresh and/or frozen.  If you are craving sweets, keep fruit around...still better than candy wink

Make sure they don't just switch you to one of the immunosuppressants.  You'll have to be on both steroid and immunosuppressant until you can do a slow wean off the steroid to maintain on the immunosuppressant.  Your LFTs should all be normal when you do wean off the steroid.  If you wean too quickly, you'll risk more joint pain than you already have and possibly a flare.

Posted 3/19/2013 4:30 PM (GMT 0)
Thank you so much for that advise! I think my Family Doctor is still trying to wrap her head around what this diagnosis is, since it was doctors from another state's university hospital that helped her come up with the diagnosis in the end. So I guess we are all kind of muddling through this one together in one sense!

I just can't wait for things to settle down and get back to reality. I have a 3 year old I want to take to the park today and instead have spent half the morning begging him to get out of my lap because it hurts too bad to have him there! It really sucks at times. Today is one of those rare ones that I am really mad at myself for getting so frustrated and I need to settle down and chill.

Thank you for all the encouragement! I sure need it today! :-)

Nicki
Posted 3/19/2013 7:58 PM (GMT 0)
Raw carrots and unsalted almonds are tasty and good for you.
Posted 3/19/2013 9:21 PM (GMT 0)
Eliminate white things from your diet; i.e., white flour, white potatoes, white rice, white sugar. Replace with wheat flour, sweet potatoes, brown rice, and brown sugar or honey.

Get rid of junk food. Difficult with a child at home, but it will be good for everyone. NO soda. Good water is best for everyone, plus milk. I'm not much of a milk drinker, but I like the soymilk product Silk in light vanilla. I sometimes put a packet of chocolate Carnation Breakfast Essentials (used to be Instant Breakfast) in it.

As suggested, lots of fresh or frozen fruits and veggies. They have fiber and water to fill you up. And eat protein (animal or legumes and soy products) with healthy carbs, like whole wheat pasta.

Hugs,
Connie
Posted 3/19/2013 9:23 PM (GMT 0)
mmm.... that sounds good!
Posted 3/19/2013 9:32 PM (GMT 0)

hep93 said...
Eliminate white things from your diet; i.e., white flour, white potatoes, white rice, white sugar. Replace with wheat flour, sweet potatoes, brown rice, and brown sugar or honey.

Get rid of junk food. Difficult with a child at home, but it will be good for everyone. NO soda. Good water is best for everyone, plus milk.

As suggested, lots of fresh or frozen fruits and veggies. They have fiber and water to fill you up. And eat protein (animal or legumes and soy products) with healthy carbs, like whole wheat pasta.

Hugs,
Connie

Really great advise here!!! Thank you so much for all the time you are all taking to go over so much with me. I just don't get it today though-- I am just BEAT! I feel like I hardly have the energy to move a muscle and on 8 mg decadron a day???

Sunday my fam doc told my husband I could increase to the 4 mg whole pill at night--but just for 10 days since the additional 1/2 pill had helped but not enough at night. Maybe I'm on the wrong steroid?

Luckily, the one "good" food thing wise for us is that we always have a nice sized garden each year and can our most of our foods (use only completely natural preservatives--lemon, vinegar, etc) and make our jams/jellies, whole wheat bread, etc... but that is not to say that when we go to the store we let temptation fly every time either--especially lately with me in bed it is easier to "just grab something for tonight" than to know my poor husband has to still cook on top of everything else he's been trying to keep up with for us all day!

And our 3 year old is so sweet wanting to help us with everything!!!! BUT, you know the kind of help a 3 year old offers is sometimes logically a little more help on the mess side than the help side! :-)

Thank you for all the encouraging notes!!! I can't even tell you how much it means already to me to feel this bad physically and see that I have a note in my email from any of my new friends I've made here and to know how much YOU really DO KNOW what it is like I am going through and how to find a positive way to not let this ruin life today--even if all I can see is TODAY at the moment! Thank you again!!!

Nicki
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