I was on Acthar for 3 months and prednisone for 8 mo. I ended up gaining 30 pounds. (Most of it came from the Acthar.) I have been off steroids 2 months. I have not lost even one pound! I work 45-50 hours a week on my feet most of the time without even a lunch. (Healthcare.). Anyway all that to say is that I am hardly sedentary. I have been eating paleo for two years. The first 4 months of steroids I was eating/drinking mostly liquids. I will admit I am not exercising but at the end of a 9-10 hour day I am exhausted and my joints are killing me. (I think the prednisone destroyed my joints. Especially hips and knees!) but back to the weight.
Has anyone successfully lost this much weight after steroids? Would appreciate any tips or advise.
It is possible to lose weight after steroids but to be completely honest it's very difficult. But stay positive! Prednisone is a very tough drug and I hate that it makes me gain weight! I've finally lost about 10 pounds since the New Year. I've been eating very small meals every 3-4 hours and I try my best to exercise. I really like Zumba but the day after I'm usually really tired. Don't over do it though, just listen to your body!
I don’t know anything about acthar. But I know alot, unfortunately about steroids. I think it’s great you were able to get off of prednisone after being on it for 8 months. How high was your dose? Being off for 2 months and no weight loss yet is not
Surprising. It takes a long time. Depends on how high your dose was
also. Don’t lose hope, you just need more time. Why do you think it destroyed your hips?
Karen M.
I have successfully lost the weight from prednisone before, however now that I’m completely menopausal (lupus shut that system down waaaaay early) I am really struggling to get the 30 lbs off. I barely eat because the cellcept keeps me nauseated but even after a month of eating less than 1200 calories a day I haven’t lost any weight. It’s really frustrating.
Due to my lupus nephritis, I was on 20mg prednisone for 6 months. I’m very slowly weaning off and am at 11mg now. I haven’t lost any weight since weaning off. In the past, after weaning off steroids, I was able to lose weight after a couple months being off but it seems harder now. Maybe age is factor too (in my case)? But I also do believe stress has a lot to do with it as well and it sounds like you’re doing a lot. Hope you’re able to lose your weight soon. Sorry I’m probably not much help.
The Acthar is injectable and makes your body start to increase its own cortisol. So while it isn’t directly a steroid it makes your body create more steroids in your body. It was like I could just feel my body getting bigger even though at the time I was on a liquid diet.
On another forum someone said high protein helped but kidney function is on the low side so have to ask dr about that.
I’ve been on varying doses of Prednisone for 22 yrs & gained 100 lbs. last yr I lost 40# partly due to decreasing the dose gradually to 5 mg,decreasing food intake, eating fruits &veggies, lean meats & exercise. Wouldn’t recommend Curves I tore my Meniscus, now I walk & exercise in a pool,easier on joints. It’s not easy to lose wt but changing your lifestyle by moving more & eating healthier works.
interesting about the acthar…I’ve never heard of that before?I just know that weight gain goes along with increased steroid doses. so you had said that your down to zero steroids for 2 months. It takes awhile for weight loss. … maybe give it a few more months and diet and exercise surely will help. Good luck!
Been on 5mg prednisone for 13 years (still taking it) and lost 50 pounds (200 down to 145-150). Predinisone dosage is not an issue due to it does the same brutal tap dance on your body when your on it a long time or been weaned off a short/long term high dose.
Ate only healthy food like organic veggies, fruit and grains, chicken, wild fish, nuts (lots). Even ate sugars that were in food that occurred naturally, i.e. homemade biscuits and the like.
Key is EXERCISE! Even if you're on your feet 24x7. You have to exercise. It doesn't have to be a vigorous killer routine even 15 minutes a day to start will help. I walk my dogs for an hour every day and voila, it keeps my weight under control along with improved eating habits. I admit I get off track a lot. I don't beat myself up about it and go back to my routine.
The weight loss has reduced the joint pain and fatigue Please don't underestimate how hard it is. I use a walker. But the exercise made/makes me very strong. I still do have some challenging days, but far less than before I lost the weight. Also pain management helps.
Staying in bed is not an option for me.
You got to hold on.
OC GAL…22 years of prednisone and down to replacement dose of 5mg… sounds like you’re doing well. Do you have any side effects from the long term use of steroids?
Wow, some of you have done so well! I have been on pred for 18 months ranging from 35 to 7.5. I have put on 42 pounds and am so tired by every little thing I cannot see how I can exercise the weight off. Good luck to you Eagle41 and everyone else with this battle,keep moving forward and never lose hope x
I took prednisone for several months back in 2009 for some endovascular embolization's for a facial AVM I have. I gained about 25 lbs during this period and have yet to lose it all. I was a Soldier my entire adult life exercising all the time; now all I can do is walk when my hips, back, feet, etc. are not bothering me too badly. Unfortunately, my diet is difficult to manage as I am on Coumadin for life and now have diabetes. Trying to figure out what I can or cannot eat is a constant challenge. I don't eat much, but still cannot seem to lose the weight. Anyway, some of you have confirmed things I have wrestled with and at the end of the day I know I must somehow het in more exercise of some type so will keep trying. Thanks for making this post and to all of you who commented, you give me some inspiration! Steve
Thanks everyone. I will try to put in exercise. Although I probably easily walk a mile at work it is stop and go. So no cardio. Maybe just 30-45 min of steady walking everyday now the weather is getting nice. Let’s keep sharing any weight loss tips we have. I have never had this much trouble losing weight. Stubborn pounds! But better the exta weight than where I was a few months ago.
I cannot seem to get rid of prednisone weight either. I weighed 118 the first time I was put on prednisone. Now 18 years later and off and on, mostly on I weigh around 170. I wish you best of luck. I also work in healthcare and constantly on my feet.
I also am having trouble losing the weight. I was on Pred for 15 years all different ranges, and now past menopause.( I hate to tell you this, but I've been try to lose the weight for 5 years) Because of all my foot and ankle problems, also balance issues I have trouble walking. Real trouble, I have a rolling walker, but try to walk in the house without it. I'm thinking of 'trying' to walk on the sidewalk with it. But I still have a fear of falling, and it on top of me. I am mostly positive about everything, but this. If anybody has any advice I welcome it. Please don't mention gyms, I can't afford it.
Let's all try to have a good day.
I am starting to i weighed 194 and now way 159. It has been very hard. I have to watch what i eat and exercise daily.
I have lost 40 lbs over a 3 yr period but it has been hard and do to not eating at all. I will have days in a row that all I do is sleep for 3-4 days and only drink water and eat very little. Also bad migraines. Then strarted taking Topramax that has helped so much for the migraines but also is a appetite suppressant. The last 15 lbs are from the new med. Also have been weaned down from 30 mg pred to 5mg tried to go to 2.5mg but my body refused, so I am back to 5 mg. It is very difficult to exercise for me because I hurt all the time
I had gained 80 lbs and was considering gastric surgery because I couldn’t lose it. The doctor recommended I go on a calorie restricted diet of 1200 calories a day, Mediterranean based, and walk 15 minutes a day. I’ve lost 20 lbs in just over 6 months, most of it in the first two months. I need to get serious again because I know it works for me. Best of luck to you all!