Nutrition and activities on steroids

actionfigurestepho · Post by **actionfigurestepho** » Tue Nov 29, 2005 8:42 am

I'm supposed to be getting my surgery within the next few weeks here, and I'm TERRIFIED of the side effects of the steroids I'm going to be on. They put me on the 'roids when I was in the hospital and I could barely walk without hurting my joints because of how they give you arthritis, and I gained so much weight I couldn't even make a fist. I'm going to be on them for the rest of my life, but the main problem will be the first 8 weeks when I'll be on a super high dose, and I'd like to not be forced to lay on my back eating cake the whole time. And then, of course I broke out. It was like being 14, only without the dating and the awkward high school social thing.

I know a few of you have had to go on similiar medications. Does anyone have any diet advice, exercise advice or even skincare advice? I'm told the average weight gain is 20 pounds but obviously I want to avoid that (10 pounds would be OK, but 20 is too much!). I also don't want to let exercising go by the wayside because I'll be too cramped up to move and end up too weak to run up the stairs when I finally can drop down to a lower dose of the steroids. Would that be a good time to take up trying to build some muscle?

Peg · Post by **Peg** » Tue Nov 29, 2005 7:02 pm

Steroids cause arthritis?

I was on steroids to help my arthritis. The weight gain sucked big time. Keep moving. I know it hurts, but unless you exercise, the weight gain will only hurt you more.

Jives · Post by **Jives** » Tue Nov 29, 2005 8:15 pm

Well, now that Peg let the cat out of the bag, I can tell you more. Peg and I both have RA. (Rheumatoid Arthritus) This isn't some "inflammatory" disease. Our own immume system is actively trying to kill us. Our own white blood cells can no longer tell the difference between our own cells and bacteria. It's similar to having battery acid in your veins. The "sizzling" feeling is your white cells eating your joints and cartilage. Extremely painful. In the past is was universally lethal. Crippling deformity was the norm before death.

Now, however, with the many new "biologics" that are out. We can lead pretty much normal lives. Sometimes even go into remission like cancer! Although there are occasional flare-ups called "exacerbations." (So please excuse my typing from time to time.)

One of the treaments that we take is Predinisone. Steroids. (Human growth hormone.)Prednisone is an auto-immune suppressor. With it we can function. (I work three jobs.) Without it, we are paralyzed.

The trade-off is that it does carry pretty serious side effects at high dosages. Above about 30 mg a day, you will gain wieight like crazy. I used to joke that I could gain five pounds from eating a quarter pounder, which wasn't true, but you get the point. You must watch your intake very carefully.

It causes hair loss. And at this dosage level, you will get what is called "round face". Your face will puff out and become circular.

It also turns your bones to powder. The calcium loss is astounding. Spiderweb fractures of the spinal column may result giving you a "widow's hump" eventually.

Also, if taken for a long period, say over a year, your adrenal glands will stop making your own natural prednisone....permanently.

The good news is that 30 mg. is a huge dose. It's usually only used in the early stages. Eventually most people taper off to much, much less. (And don't EVER forget your meds. Stopping too quickly can shock your system and cause REALLY serious problems!)

I, myself, am down to only 4 mg. a day. At that dosage I have virtually no side effects. I am a slim and trim 200 lbs. (I'm 6'1" so that's pretty ideal for me.) My hair is fine and thick, and my calcium loss is negligible, offset by a huge milk consuption per day. A nice side effect of Prednisone is that if you are active, it builds muscle fantastically! (Why do you think the football players look like that?)

I mix the Predinisone with Arava (10mg) which I highly recommend. Arava is a state of the art immune supressor without any side effects at all. (Of course it is $412 a month, so you'd better have awesome insurance.) Between the two, the experts say that I will live a normal lifespan with very little loss of movement or quality of life.

I can now skateboard again. (How many 45-year-olds do you know that can do that?) I am taking guitar lessons, I teach 14 hours a day on my feet, work lunch duty, do all the yard work, and I'm going skiing again this winter.

Attached files

Jives · Post by **Jives** » Wed Nov 30, 2005 9:04 am

Actually, I've lost even more weight since that picture, so don't worry about the weight thing Stepho.

StupidCowboyTricks · Post by **StupidCowboyTricks** » Wed Nov 30, 2005 9:13 am

Jives wrote: Actually, I've lost even more weight since that picture, so don't worry about the weight thing Stepho.
Hi I take large doses of Prednisone from time to time for my lungs, do you cramp in the muscles?

Jives · Post by **Jives** » Wed Nov 30, 2005 10:59 am

That's interesting, Cowboy. Is it for asthma? When you take these large doses, do you take a progressively smaller dose each day after that until you are completely tapered off? Or do you just megadose, then quit?

StupidCowboyTricks · Post by **StupidCowboyTricks** » Wed Nov 30, 2005 11:26 am

Jives wrote: That's interesting, Cowboy. Is it for asthma? When you take these large doses, do you take a progressively smaller dose each day after that until you are completely tapered off? Or do you just megadose, then quit?
It is for COPD. I usually get sick go into hospital and have steroid drip and then I take the pills and taper anywhere from a week to a month, and there are steroids in my inhailents....I am female and suspect I am getting arthritis too,as some days every joint in my body hurts and it takes so much to move. I've been more or less been told I have emphysema. (it being the main component of my copd)

Jives · Post by **Jives** » Wed Nov 30, 2005 1:01 pm

StupidCowboyTricks wrote: It is for COPD. I usually get sick go into hospital and have steroid drip and then I take the pills and taper anywhere from a week to a month, and there are steroids in my inhalents....I am female and suspect I am getting arthritis too,as some days every joint in my body hurts and it takes so much to move. I've been more or less been told I have emphysema. (it being the main component of my copd)
Wow. That's pretty far out of my league. What's COPD?

lady cop · Post by **lady cop** » Wed Nov 30, 2005 1:05 pm

[quote=Jives]Wow. That's pretty far out of my league. What's COPD?]chronic obstructive lung disorder, can include emphysema.

valerie · Post by **valerie** » Wed Nov 30, 2005 3:23 pm

Generally, but not always, related to smoking.

actionfigurestepho · Post by **actionfigurestepho** » Sun Dec 04, 2005 8:36 am

Jives, thank you so much for your post! I will be on prednisone so that my immune system won't reject my brother's kidney. I knew I'd be on a high dose at first, and they'd hinted at lowering it, but I'm really relieved to know that they HAVE to lower it. I was afraid they'd just keep me on a high dose because I'm young. I'm QUITE relieved to hear that when they drop me down I'll go back to normal. I'm barely going to be able to afford my meds, much less a new, much larger wardrobe!

I'm not so worried about the hair loss part. I'm on Minoxidil right now for my blood pressure, and that makes me GROW hair like crazy! They'll probably cancel each other out, and then I won't have to worry about buying Nair anymore.

The high dose I was on in the hospital DID give me arthritic symptoms. My joints were swollen...that could have been a temporary reaction that I personally had because I tend to have bad side effects to medications. It might have also been the water retention the steroid causes which would put the strain on my joints.

I'm also glad to hear that I'll finally be able to build muscle! Kidney disease causes you to lose lots of protein, meaning I have arms like spaghetti. I'll be sure to start doing more weight resistance...that'll probably help me with the weight gain as well.

Now, I've heard that Prednisone doesn't necessarily make you hungry all the time, it just makes food "taste better." Is that true? I know some of the weight gain is due to the water retention (ironically I'm getting a kidney so that I don't have water retention, so explain THAT) but is it also because you eat more? Or does it just slow your metabolism?

Post by **Betty Boop** » Sun Dec 04, 2005 10:45 am

I've taken prednisolone on and off for years now. I guess I'm lucky in a way that I generally only take them for short periods, when my eczema goes bananas and there is no other way of calming it down.

I can sympathise with the 'moon face' and weight gain, I found that part very distressing. I'm sure you won't be on such a high dose forever.

I wish you the best of luck, what a great christmas present for you!:-4

BabyRider · Post by **BabyRider** » Sun Dec 04, 2005 10:55 am

Hey, Steph, if you're concerned about your joints, ask your Dr. about sharks cartilege, or Knoz gelatin made for joint support. My step-dad injured his knee a few years ago and the gelatin and shark supplement did wonders for his range of motion.

Jives · Post by **Jives** » Mon Dec 05, 2005 11:22 am

actionfigurestepho wrote: I found out that she'd just HAD her transplant. I was freaked out!

The greyness was most likely from the stress of the operation, not the prednisone.

the doctors always talk about "The Drugs" in capital letters with these grave tones of voices.

And it's no wonder, at high doses, Prednisone is very dangerous. But your body has a smaller dose running around in your veins all day naturally! So it's not as bad as they say.

Try to get down to 5MG. or below. At that dosage, all of my doctors say, (and so does allthe research) that you will be perfectly normal and have no side effects. (actually I was at 10 for quite a while and just barely had any effects.)

Apparently a lot of young ladies just stop taking the steroids because of the side effects.

And "just stopping" is vvery dangerous like I said. The body kind of "freaks out" when you suddenly stop prednisone.

I'm glad to know that if I tough it out they HAVE to drop my dosage. I can't imagine getting surgery if I were going to be sicker afterwards than before, and the fact that I don't have much of a choice is frightening. I'd hate to be saved from dialysis only to be stuck indoors on 30 mg a day of immune supressors, fearful any and all germs.

I'm glad you brought up that fear on germs. It can get to be an obsession it you let it.

Do you get sick a lot now that you're on supressors?

Actually NO! I have only been sick once inthe last five years that I've been on Predinisone! since my immune system was previously compromised, I was getting sick quite often. Six to seven times a year in fact. I thought that was normal. Since I now take some common sense precautions, I very rarely get sick at all! (And of course my immune system is operating at a normal level now.)

Do you take any special precautions visiting people, or in cleaning your house?

Now listen carefully: Even if you are not in this thread, even if you are fine physically, listen to me now:

1. Use your common sense. Be clean. how many times have I eaten food without washing my hands? Touched my face? Stuck a finger in my mouth or rubbed my eyes?

Most people don't even think about it!But you should!!!

Wash your hands before doing any of these things. Get some anti-bacterial soap, and just wash your hands before eating or sticking your fingers in body holes. DUH!

I have personally seen kids sneeze into their hands, then grab a doorknob and walk out. Every kid after that grabs the smae doorknob, no wonder schools have pandemics! I work on a bacteriological battlefield. yet with the following simple rules, I haven't been sick in three years!

I do wear a mask, but only if I am within one foot of a sick studnet's face. I make a joke about it, but I do it. this happens about once every two months. If the student is truly ill and they have their nose running and they are sneezing, I tell them just to keep their distance.

At the end of the day, I wash my hands when I get home. You should see how black the water gets! I never realized just how dirty they were before! I used to come home and fix myself a snack, leave it on the counter, then eat off the coffe table for Pete's sake! NO MORE!

Just some simple precautions, just a little alertness is all that's required. "Wear a mask everywhere" is just plain reidiculous!

Just watch out for sick people, keep them at arm's length, don't let them drink out of your milk carton, and wash your hands before touching your face, picking your nose, licking your fingers, or eating!!

If there is anyone on these boards that doesn't enjoy being sick, all you have to do is follow these simple, easy to do guidelines and you will be healthy for the entire year! Flu shot be damned!

StupidCowboyTricks · Post by **StupidCowboyTricks** » Mon Dec 05, 2005 6:05 pm

[quote=Far Rider]Hmmm, interesting thread...

I still have a block looking head... all the docs say its from the steroids???

actionfigurestepho · Post by **actionfigurestepho** » Wed Dec 07, 2005 9:28 am

Far Rider wrote: My face use to be thin and now even though I lost all this weight (38 pounds) I still have a block looking head... all the docs say its from the steroids???

*claps hands over eyes* LALALALALALALALALA! I'm not loooookkkkiiiinnnngggggg........

in10city · Post by **in10city** » Wed Dec 07, 2005 9:45 am

actionfigurestepho wrote: I'm also glad to hear that I'll finally be able to build muscle! Kidney disease causes you to lose lots of protein, meaning I have arms like spaghetti. I'll be sure to start doing more weight resistance...that'll probably help me with the weight gain as well.

Just to make sure you understand, prednisone is NOT anabolic/androgenic and WILL NOT cause muscle hypertrophy. You may retain extra fluid (water retention) but that is not the same as muscle growth from anabolic steroids.

Most anabolic's only cause mild appetite increase as a by product of their effect on the body's metablism. If your liver disease kept your body in a catabolic state the operation should make that better. Talk to your doctor and an endocrinologist about anything you could safely take to rebuild some of your lost muscle. Most anabolic steroids are pretty harsh on the liver and kidneys but Growth Hormone and/or Insulin Like Growth Factor-1 may help you regain some lost size and would certainly assist your recovery.

Best of luck with your surgery!

actionfigurestepho · Post by **actionfigurestepho** » Wed Dec 07, 2005 9:55 am

in10city wrote: Just to make sure you understand, prednisone is NOT anabolic/androgenic and WILL NOT cause muscle hypertrophy. You may retain extra fluid (water retention) but that is not the same as muscle growth from anabolic steroids. I think this water retention thing is ironic, since one of the issues with kidney disease is water retention.

in10city wrote:

Most anabolic's only cause mild appetite increase as a by product of their effect on the body's metablism. What about prednisone though? Will that cause a huge appetite increase?

in10city · Post by **in10city** » Thu Dec 08, 2005 6:32 am

As far as your water retention, just as you probably already have been doing, monitor your sodium intake and keep it to a minimum. You will also want to be careful with carbohydrates. Each gram of carb requires 2.7 grams of water to hold in your system so loading up on carbs alone will make you hold water.

I've heard different results with people taking prednisone and appitite stimulation. My best recommendation would be to start watching the clock and eating every 3 hours but SMALL amounts of complex carbs, protein and monounsaturated fats so that your blood sugar levels are maintained at a constant level and you won't have the tendancy to overeat at any one setting. Eating every 3 hours will jack your metabolism up faster and better than most any exercise program. Now, if you combine exercise with a frequent eating schedule you'll have the double beneift.

Bentley · Post by **Bentley** » Thu Dec 08, 2005 3:05 pm

Back when I was on prednisone (read: middle school), I had a much greater appetite then I do now. It's possible that the drugs did it, but honestly I think it's the fact that dialysis combined with kidney failure have made my appetite sink drastically. Personally, and I don't know what you're like with this Stepho, I can hardly eat two meals a day.

The swelling can be managed if you maintain a (very) low sodium diet. No chinese food, no pizza, etc etc. If you want to eat that stuff, you can.. but you'll get sweliing in your eyes, fingers, feet, and you might vomit in the morning. I used to feel really, really, sick when I ate salt while on higher doses of prednisone (10-20mg qd.. or bid, I can't remember.) Just take it easy till you get the feel of it.

- Bentley