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Posted 7/9/2009 11:16 PM (GMT 0)
Okay!  I know i've brought this subject up at least 100 times before...But I am soooooooooooooooo FAT and miserable.  I desperately need to lose this weight!  I am hungry ALL the time!  What in the world am I going to do???????  Judy
Posted 7/10/2009 1:09 AM (GMT 0)
Hi Giny, iknow what your going through ever since i was officially diagnosed i've gaining weight non-stop (30lbs to be exact) its hard when your on steroids (im asuming your on prednisone) i've been on prednisone for about 2 years. for the about a month now i've eliminated red meat, and started taking long walks with my husband and lost 10lbs. i started gluten-free diet almost two weeks ago and have lost 3 more lbs. i got fed up of gaining and gaining weight. gluten-free diet is not as bad as i thought i eat brown rice pasta every day (pasta is my weakness) eating gluten-free has forced me to eat more fruits and vegetables so that helps. trader joe's has a great and inexpensive gluten-free products. other lupies i know have gone organic and lost alot of weight and eliviated some of their symptoms.
Posted 7/10/2009 1:25 AM (GMT 0)
A simple, normal diet -- protein, vegetables, fruit -- avoid white stuff (potatoes, bread, other carbohydrates like sodas) . The prednisone ACTIVELY creates a change in metabolism that makes us crave crabs -- knowing that and avoiding carbs is a big piece of the "oh my god i'm a whale" reaction. Meat/chicken/fish proteins or soy/bean protein doesn't matter, but you NEED protein to heal.

Moderate exercise as you are able. Even if the exercise starts with just being able to walk to the mailbox, do it every day for a week, then add about 10% more each week. That is, if the mailbox is 10 steps round trip, add 10 x .02 = 2 more steps the next week. Build slow and steady -- otherwise we get too ambitious and have HUGE crashes and go inactive for weeks & have to start over.

Hungry all the time -- I keep carrots, celery, and almonds around. Already cut up and ready-to-eat. When I'm hungry, I drink 8+ ounces of water, have 20 almonds, and a handful of carrots -- add celery as needed. Then don't go back near the kitchen for at least 1.5 or 2 hours.

Kiss - Keep It Simple - is a easy gentle way to start...
Hang in there,
Posted 7/10/2009 1:40 AM (GMT 0)
Yup, Lynnwood nailed it.  Judy if you can get moving and try and kick-start your metabolism a bit, you'll be amazed at what your body can do.  It wants to well!  A big diet problem is diet pop.  Aspartame will increase your fat a lot!  If you drink that stuff, stop!  Also, like Lynnwood said, all that "white" food is so bad for us.  Stick to whole foods.  Veggies, fruit, whole grains.  No fast food! 

 

Seriously, you'll be amazed if you do a complete diet cleanse!  We'll help you through it!

 

Blessings,

Gin

Posted 7/10/2009 2:50 AM (GMT 0)
Thanx guys! I know y'all get sick of hearing from me on this. I don't drink diet sodas at all...I am a coke addict (coca cola, that is) I was completely off of it while I was doing dialysis...it's a major no-no! I need to stop, it just settles my queeziness so much! I'm going to give it a try y'all...thanx for always being willing to encourage me! Please pray for me on this issue! I did it once and I know I can do it again...
Posted 7/10/2009 4:56 AM (GMT 0)

I have been gaining weight recently - for reasons I can't quite nail down.  I'm not dieting like I should be (need to lose 30-40lbs) but I'm not doing much differently, and my activity level has actually increased since the winter when I was pretty sick.  During that flare, I lost weight rapidly and without trying (10 lbs in 3 wks.)  Granted, my appetite was reduced, but so was my activity - which some days was nil. 

At that time I just assumed the weight loss was from the flare.  I expected a rebound, but now I'm UP about 10 lbs on top of gaining back the 10 I lost.   I do eat too much sugar in the form of chocolate.  But I've been doing that for eons.  I have read that one of the many symptoms of Lupus is either weight loss or gain.  Haven't been feeling as well again of late.  Do you think there is a connection? 

I'm not taking Pred or anything beyond the vit D and Plaquenil - so it isn't medication related.  Perhaps I lost muscle during that flare and thus reduced my metabolic rate?

 Judy - I know how hard it is to kick what seems like the ONE thing you enjoy.  I don't drink or smoke - eat my fruits and vegies - watch my carbs, and stay away from soda pop, etc., except for the darn chocolate. 

Lynnwood - I just can't seem to get that 10% increase down.  For some stupid reason every time I start to feel better, I somehow believe it's going to last this time, and I enjoy every minute of energy and start planning things into the next week, month, year, etc. until I go down in a fiery crash.  I don't read the road signs until it's too late ........

Today a friend showed me her pedometer - keeps track of how many steps you take.  Maybe that would be helpful to motivate and calculate.  Gotta do something, too!

Lucy

Posted 7/11/2009 4:45 PM (GMT 0)
Did you guys see the clip with Matt Lauer interviewing the guy who lost 410 pounds in like 26 months? He looks amazing!!! He was 650 pounds! THat's inspiring!

I had to tell y'all this.  My mom is here at my grandmother's today (where i'm staying) cooking gumbo and potato salad!  We live just about 45 miles north of New Orleans and let me tell ya, "please pass the alfalfa sprouts" is not a common phrase in our family!  Everything is smothered in gravy or deep fried!  I've got ALOT to overcome!  But...I can do it!  Judy

Post Edited (MJLD) : 7/11/2009 12:26:49 PM (GMT-6)

Posted 7/11/2009 6:37 PM (GMT 0)
Lynnwood has it right.  Prednisone does change things but not that much.  It does create food cravings and those on prednisone should reduce carbs and avoid simple sugars.  It also redistributes where our bodies store fat...to our belly, face, and back.

However, weight gain is stil an equation of calories in vs. calories out.  If you want to lose weight and keep it off you need to change your habits.  If you have become more sedentary then you will burn fewer calories.  If you are eating, even at little more, comfort foods they tend to be high in fat and calories.  It only takes small changes to gain or lose weight.

If you have the problem that I have which is a significant loss of muscle cells from polymyositis the problem if further compounded.  Those are our furnace...smaller furnace, less activity = weight gain.  Many of us with chronic diseases do not make the changes in our diet and then blame prednisone or something else for weight gain.  Pred does not make it easier but it can be done.

Keep a log for a week of what you eat and see if you are eating too much of the wrong foods.  I would bet that you are eating more of some undesirable things than you think...or you are just eating too many calories for your activity level.  Construct a sensible, healthy diet and restrict calories a little and try to become more active.  It will work if you give it time.  And as Lynnwood said make sure you get plenty of protein in some form. 

There are anti inflammatory diets ( Dr Weil has a good one) that are generally healthy and can help those of us with inflammatory diseases like lupus and myositis.

Good luck,

Bill

Posted 7/11/2009 7:10 PM (GMT 0)
I forgot to say -- if you change your diet or exercise, please make sure to let your doctors know about it. These changes can affect how your meds work, and they need to know so that they can keep a clear picture of your health in mind.

Especially if you consider the "anti-inflammatory diets or supplements -- these can work against what your meds are supposed to do! Please keep safe by checking w/the dr!
Posted 7/12/2009 12:25 AM (GMT 0)
Thanx so much to all of you for your advice, encouragement and support. I will have to respectfully disagree that prednisone doesn't change things that much. I have taken some massive doses for very extended periods of time and I can tell you they really, really changed things for me! I'm sure the dose and duration make a difference. I have taken 1,000mg of solumedrol iv for 5 days and then be on 120mg of prednisone by mouth for weeks until I was so toxic my hair began to fall out. And i've done that little routine many times over the last ten years.

I would be the first to say that I eat the wrong things and have definitely become more sedentary, but prednisone has had more than a little impact on my life! Last month made 10 years on the stuff for me, with very little time off of it. I stay ravenous! I am going to try the high protein low carb, whole foods thing and increase my activities (with the blessing of my doc) and I will keep you guys posted! Thanx again, Judy
Posted 7/12/2009 1:31 AM (GMT 0)
If you though I was saying that Prednisone doesn't change things -- nope, it changes lots of things. I was just mentioning a few simple changes that can help control the pred changes.

Some people will see better results than others by chaging a couple of dietary habits & exercise. But it's a given that if nothing changes...nothing changes!

And no-one should feel at all guilty about weight gain since the pred does make actual metabolic changes -- I put myself on a guilt trip about the weight until I found that out - wish I knew where the article was that I'd found.

120 mg daily for weeks!!! OMG. Did you get any sleep at all? My highest was 15mg and I needed meds to sleep, I can't imagine 129 mg!
Posted 7/12/2009 1:53 AM (GMT 0)
I'm telling you I didn't sleep much at all I literally felt as if my teeth were rattling! I was an emotional basket case. I gained enormous amounts of weight. Also, I was NEVER sedentary until I became sick. Now, I do feel like it's a cycle, just like my eating, that i've got to break.

I really appreciate the advice about dietary changes that help with the cravings. I'm going to do it! I am totally humiliated about the way I look. And I know I will feel so much better even on the bad days with the weight gone.
Posted 7/12/2009 3:29 AM (GMT 0)
Good for you Judy!  I like your spunk and determination.  That kind of attitude will get you far!

 

In the 2 months that I've been working out hard, I've been able to come down 2 mg of prednisone.  From 8mg down to 6mg.  I knew I needed to drop it because I was having the shakes and feeling totally hyper and gross.  Kind of like how you described being on 120mg for weeks!  Good grief girl....  So with exercise in the right doses, you can hope for a decrease in pred too.  Of course each person is different but when the body is given a chance it runs with it! 

 

Rememer, baby steps with realistic goals. Aim for little improvements and if you see big ones happening you can do the happy dance yeah !

 

 

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