I'm a new member so hello! I was on Prednisone for six months after being diagnosed with RA. It was a fairly low dose (10mg) but it was enough to make me gain 40 pounds. I started off trying to keep the weight under control by working out but I gave up because the scale kept going up no matter what I did. I had pretty much every side effect that went along with it. I was a crazy person with anxiety attacks, mood swings, and I could not stop eating. I've been off it since October. I decided after all the holidays that I would try to get things under control. I've been doing the point system (like Weight Watchers) without actually joining the program. I have lost five pounds in two weeks and around another seven before that. I'm hoping the scale keeps moving in the right direction. Exercise is challenging because I am somewhat limited in what I can do. My primary doctor has been very supportive. He assures me that my adrenal glands will start to kick back in to help with the weight loss. He also told me that once the weight does start coming off, there should be some joint improvement. Here's hoping!
I cringe as I read how many people suffer from lupus and the ravaging effects of the disease and its "treatment" prednisone. In my little world, I hoped that no one else had to suffer as I have, so I'm sad to see how many of you there are.
I had high dose solu-medrol treatments for 4 days in the hospital and am now on 60mg preddie a day for CNS lupus. It has proven to be toxic to me and they're now desperately trying to get me off, but it takes time. yuk.
I'm losing weight, despite the stupid prednisone. A lot of the advice people in this forum have provided is so true and I'll re-iterate what's worked for me. But to be honest, I have a seriously decreased sense of taste from the drug so cravings are not an issue. Eveything looks lame to me right now.
I asked my doctor to prescribe protonix while I'm on the preddie. It really helps with the heartburn and the acid from the hunger. Some people may even just get relief from prilosec OTC. I also take a stool softener and i got some probiotics from walgreens. You gotta keep the tummy moving every day. Do whatever it takes to keep that crap (literally) out of your body. Im anemic too so taking iron is NOT helping that situation. :-)
First let me list (as some have already) the things to avoid. Salt. It is now your enemy. Prednisone does a lot of messing with the mineral uptake of your body and salt is bad. Avoid it at all costs. Because preddie also messes with your blood sugar, you should really cut out all sugars or they will convert to fat and stick to you. Check the glycemic index of foods, even fresh fruits, and eat only really low GI foods. Watch out for sugar, it has many aliases and it hides covertly in lots of sauces and dressings. Last on the high hit list are the saturated fats. Cut the cheese (tee hee) and go for greek yogurt (without the sugar) and use oilive and flaxseed oils for your dressings and cooking.
Ok, so what CAN you eat? Sounds like all the fun is gone from food? I want to encourage you to explore FRESH herbs. Oh my, they're so much better than the crummy dried spices. Rubbing garlic and rosemary on chicken is so delish! You can buy some fresh herbs in a tube now in the produce section of your supermarket and they make great rubs and spreads. So good.
Fresh chicken, fish, shrimp. Yummy asian flavors of ginger, sesame oil, garlic. Whole grain (limited portions) pastas and brown rice noodles are very satisfying. And fresh veggies or flash cooked with herbs and spices are so very yummy.
I tried just focusing on the things I CAN have and not what I can't. Ive been so sick, I'm just happy to eat anything and I'll DO anything to get better.
My love to all my auto-immune comrades. We will overcome. God be with you.
I'm a new member so hello! I was on Prednisone for six months after being diagnosed with RA. It was a fairly low dose (10mg) but it was enough to make me gain 40 pounds. I started off trying to keep the weight under control by working out but I gave up because the scale kept going up no matter what I did. I had pretty much every side effect that went along with it. I was a crazy person with anxiety attacks, mood swings, and I could not stop eating. I've been off it since October. I decided after all the holidays that I would try to get things under control. I've been doing the point system (like Weight Watchers) without actually joining the program. I have lost five pounds in two weeks and around another seven before that. I'm hoping the scale keeps moving in the right direction. Exercise is challenging because I am somewhat limited in what I can do. My primary doctor has been very supportive. He assures me that my adrenal glands will start to kick back in to help with the weight loss. He also told me that once the weight does start coming off, there should be some joint improvement. Here's hoping!
Hi my name is Marian and Im so glad i have found this forum. Its comforting to find others that are struggling with weight loss and having to take meds. Im currently taking pplaqunel, Immuran, and infusion drip for Lupus. I have at least 70 more pounds to loose. I started the PINK METHOD and so far have lost 14 #'s and a total of 10.5 inches total. My issue right now is that the workout part of the plan is near impossible. I'm in pain most of the day because of joint damage and decreased lung capacity caused my scarring from my most recent flare up. Anyone out there that can identify? Hope everyone's day is as blessed as mine......cause truth be told, I am blessed!
Oh sweetie, you're doing so much good. Don't pressure yourself to work out more than your body can handle. You're on a lot of meds that really mess with your body. You're on a good program and you're making amazing progress. Give your body the rest it needs and don't overstress. Your lupus will thrive on stress. You ARE blessed.
Last edited by Worshipgirl; 02-06-2012 at 02:27 PM.
Anyone on a long-term prednisone dose should read up on the side-effects. My mom was on 15 Mg twice daily for lupus for years and it essentially ruined her life. After nearly losing her to diabetes related infection (she developed diabetes after a few years on the prednisone), a new group of doctors decided that she needed to come off the meds. She began her taper down about two years ago and has been completely off the med for 6-9 months. As she dropped down 3 Mg every 6 weeks her body basically shut down (prednisone withdrawal syndrome), landing her in the hospital too many times to count. Since starting her journey she has lost about 200 lbs and is no longer diabetic, however she still deals with negative side-effects from prednisone every single day. I know everyone is different, but please PLEASE look into it!!!
I was diagnosed with Lupus in October 2005. I remember it because it was Halloween and I was convinced I was going to die any day.
Long story short... I was on prednisone, I was on Methotrexate. I felt like ****. I gained tons of weight (over and above the 257 I have in my ticker... but I wasn't keeping track, it was depressing).
I had to make a decision... lay down and let this flipping thing eat me alive, or take control of my life. I chose the latter.
Losing the weight has helped immensely. I no longer take any medication whatsoever and I have never felt better. My doctors consider me in remission.
Things I avoid: Milk, Beef, Starches and sugars.
Things I supplement with: Omega3, Flaxseed, Cinnamon, Cayenne, Coconut oil, Feverfew, Megadose VitD3 (I think this has made the biggest difference) plus others depending on how I'm feeling. TONS of leafy greens.
It's key to try to reduce stress. Trust me, this has not been easy in my life. I had to evacuate my children from Japan in March and I was sure I'd land myself in the hospital. Somehow I've avoided it so far. I wound up with some heart trouble and a raging kidney infection but both are under control now. Accupuncture is amazing for stress.
I HAVE to stay on top of my diet. If I let myself slip and start eating crap my body lets me know. My doctor recommended that I don't exercise, for some reason, I do anyway. I feel better when I do and my joints stay lubricated and pain free.
Feel free to PM me. It sucks, I know... but I believe this CAN be beat!!! Do not let the Lupus win.
Is there anyone else that can relate to "water weight gain caused by prednisone?" From 60 mgs of pred 2 years ago, to being pred free for 10 months, I gained 50 lbs and have only lost 15 after going on a gluten free diet. For the past 10 months the other 40 pounds is so hard to lose. it's difficult to walk, stand or exercise although I go to physical therapy 3 times a week and do the workout regime, but I still have so much water weight bloat! I'm now trying a low dose water pill my md prescribed, but they really don't seem to be working...another dr says that the water is intracellular or in other words, inside my cells and not the water weight you can push your fingers in your skin and see. the water is all over and not just in one concentrated area. Can anyone relate? I am so tired of hearing, "give it time" that I want to scream. The water weight is so bad it is physically impossible for me to "run" my body is so weighted down!
Is there anyone else that can relate to "water weight gain caused by prednisone?" From 60 mgs of pred 2 years ago, to being pred free for 10 months, I gained 50 lbs and have only lost 15 after going on a gluten free diet. For the past 10 months the other 40 pounds is so hard to lose. it's difficult to walk, stand or exercise although I go to physical therapy 3 times a week and do the workout regime, but I still have so much water weight bloat! I'm now trying a low dose water pill my md prescribed, but they really don't seem to be working...another dr says that the water is intracellular or in other words, inside my cells and not the water weight you can push your fingers in your skin and see. the water is all over and not just in one concentrated area. Can anyone relate? I am so tired of hearing, "give it time" that I want to scream. The water weight is so bad it is physically impossible for me to "run" my body is so weighted down!
Have you tried drinking as much water as you possibly can? I know when I was on it, I was horribly swollen. I don't necessarily know that it was water weight but it was crazy. I can't tell you how many times I was asked if I was pregnant. I wasn't on nearly as high of a dose and for as long as you were. As long as you are doing the exercises you can, then you are doing more than someone sitting on the couch. Keep it up and you will get there.
Have you tried drinking as much water as you possibly can? I know when I was on it, I was horribly swollen. I don't necessarily know that it was water weight but it was crazy. I can't tell you how many times I was asked if I was pregnant. I wasn't on nearly as high of a dose and for as long as you were. As long as you are doing the exercises you can, then you are doing more than someone sitting on the couch. Keep it up and you will get there.
I drink some water, but haven't had the urge to drink much....at this point I will try it, since I am resorting to water pills. I definitely have water all over my body...it's heavy and restricts me from walking, bending standing, etc. Thank you so much for the reply :-) ...10 months on no more meds, and over a year since on a low dose (10mgs.)
Last edited by 1of8atmayo; 02-08-2012 at 11:51 AM.
Reason: additional note...typo
Try to drink at least 64 ounces a day, even if you don't feel like it. It will help flush the extra water out of your system. I like to put a slice of lemon in my water. It gives it just a little extra flavor.
Yeah, I'm on 60 mg a day. Drinking more water seems counter-intuitive, but it's true. It helps to keep your system flushed. Also, avoid salt at all costs. No soups or pre-made foods. Go for fresh herbs and spices. I know how you feel, every evening I go to bed distended from bloat and my body is so swollen from the water that my legs feel like dead weights. Bless you.
I was diagnosed with lupus and I was on Prednisone for 8 months. It completely messed me up...weight gain, mood swings etc. -- I was having severe lupus flare ups and Prednisone seemed to be the only thing that brought some relief; UNTIL I went off gluten. -- Once I was off all grain products, my lupus flare ups started going away...Now a year and some months later, living gluten free life style, I have only had 2 or 3 MILD flare ups. ~ Worked for me, maybe someone could be helped by my experience.
Prednisone Goes up and down but the weight always goes up
I've been on various levels of prednisone for almost 2 years. Seems like every time I get below 10 mg, something happens and the doctors bump me back up. The first year I found this website and following some of the tips for the 1500 calorie diet, I was able to keep the weight gain minimal (about 10 lbs). This last bump up packed on 15+ more pounds. I got the hump, the moonface, the shoulder pads, the pot belly - I don't even recognize myself anymore. I had to buy new clothes after the first 10 lbs, now I'm on the verge of outgrowing those. I hate to go out to my kids' activities or even to my part-time job because I hate the way I look. I've tried the "better fat than dead" mantra, and it helps keep a basement on my depression, but it's not helping me stay motivated to stick to a diet. Exercising is a little easier to stick with because it does make me feel better, but I'm a total failure at resisting overeating or eating the "wrong" things. I asked my doctor if this weight would come off if I ever got off the steroids and she said the moonface should go away when I get below 5 mg, but the weight I'll just have to work at.
I joined this site today because I have to have someone to tell all this too. My husband tries hard to be sympathetic and encouraging, but somehow all his kind words just feel hollow. If I talk about it too much, then he gets blue as well, and at least one of us needs to be "normal" to deal with the kids.
I've been on various levels of prednisone for almost 2 years. Seems like every time I get below 10 mg, something happens and the doctors bump me back up. The first year I found this website and following some of the tips for the 1500 calorie diet, I was able to keep the weight gain minimal (about 10 lbs). This last bump up packed on 15+ more pounds. I got the hump, the moonface, the shoulder pads, the pot belly - I don't even recognize myself anymore. I had to buy new clothes after the first 10 lbs, now I'm on the verge of outgrowing those. I hate to go out to my kids' activities or even to my part-time job because I hate the way I look. I've tried the "better fat than dead" mantra, and it helps keep a basement on my depression, but it's not helping me stay motivated to stick to a diet. Exercising is a little easier to stick with because it does make me feel better, but I'm a total failure at resisting overeating or eating the "wrong" things. I asked my doctor if this weight would come off if I ever got off the steroids and she said the moonface should go away when I get below 5 mg, but the weight I'll just have to work at.
I joined this site today because I have to have someone to tell all this too. My husband tries hard to be sympathetic and encouraging, but somehow all his kind words just feel hollow. If I talk about it too much, then he gets blue as well, and at least one of us needs to be "normal" to deal with the kids.
Thanks for listening.
If you have read this thread you will find many things that help with the weight gain. I was on and off high doses of Prednisone for 6 years for a blood disorder and once I got my diet straight things improved 100%. Lots of water, keep sodium intake to under 500mg day, little to no sugar (which for me included fruits), and no bread (when I look back I eliminated Gluten without realizing what I had done).
I ate lots of veggies and lean proteins (fish, tofu, chicken, turkey, pork). I think if you keep your sodium level to under 500 mg a day it eliminates many of the weight triggers automatically.
You are more in control than you realize - every bite you take can bring you closer to your goals and give you some control of what I am sure feels like an uncontrollable situation, I know mine did.
Negative side-effects
