Anyone else lost weight on long term steroids?

lfactor123
lfactor123 Posts: 3 Member
edited November 12 in Health and Weight Loss
Hey everyone!

So, I just was wondering if anyone had experience with steroids and weight loss. I have to take steroids for the rest of my life (I have Addison's disease). All the weight loss forums I've seen just say things like, "When you get off of them, go on this diet and you can get back to your goal weight". Well, unfortunately, that doesn't apply to me, so I have to try to loose the weight while taking them.

I gained at least 30 pounds since starting the medication. Dr lowered the dose slightly. so now I've been able to loose 18 pounds between going to the gym and being on 1200 calories a day. I'm totally happy about the weight loss so far! With that said though, so please don't misunderstand, I am a bit frustrated because I've stalled a bit over the past few months. I've been able to loose some, but it's REALLY slow and discouraging because I feel like I'm working hard.

The main frustration is the drug has disproportionately put weight around my middle. I've heard having a lot of excess fat there is one of the worst kinds of fat storage. This has also caused my blood sugar levels to be a bit high. I'm really trying to loose general body fat and gain muscle, and loose another 5 inches off my stomach. I've been going to the gym weekly and worked with a trainer a few times to get a workout set. I feel really alone in this because most people are loosing weight for different reasons. I never had a weight problem before now and generally ate pretty healthy.

So, has anyone else had success with loosing weight on these kinds of drugs? Is it even possible to get back to your original "before" weight while on steroids? When my body stores fat now, will it just automatically go to my middle or under my chin? I'm assuming you just have to lower your general body fat percentage to try to combat this?

Thanks for reading and for your help!! Anything would definitely be an encouragement!
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Replies

  • chiquitatwist
    chiquitatwist Posts: 54 Member
    I don't know if this is an option for you, but there is a steroid called Entocort which is reported to produce fewer side effects than steroids like Prednisone (according to my Dr.). I have been on both at one point or another and found that I wasn't as hungry while on Entocort. As far as fat depositing, taking the lowest dosage possible is your best bet. Have you found your maintenance dosage yet or are you still playing around with it? I have been successful at losing weight while on steroids, but it does feel like it takes more work. Sounds like you're doing everything you can to stick with a healthy program, which is all you can really do. I know how frustrating it can be to work your *kitten* off and then look down and realize that you will never have the flat stomach that you've been striving for.
  • twoscimitars
    twoscimitars Posts: 272 Member
    I'd be excited to hear any input myself. I am also on steroids. I don't have full blown Addison's yet, but I do have an adrenal insufficiency. I was on Hydrocortisone for awhile but that made me binge like crazy. The Prednisone makes me less hungry, but it's still tough to stick to a diet. Any help or advice would be most welcome.
  • riccoismydog
    riccoismydog Posts: 319 Member
    Bump for later. I'm not on steroids, but another drug that makes me put on weight. I too can only lose it with a lot of work and calorie cutting.
  • sempertracy
    sempertracy Posts: 50 Member
    Sodium intake, watch your sodium especially if you eat out. I go on steriods for my asthma intermittently and I have to avoid eating out, processed foods and no added salt. I gained nearly 30 lbs from my first bout of steriods. But you can lose weight while on treatment.
  • lfactor123
    lfactor123 Posts: 3 Member
    @chiquitatwist- Thanks for the suggestion. Unfortunately, the Entocort is a slightly different type of steroid, in that it doesn't have the same impact on the adrenal gland that other corticosteroids have :( Seems like a great drug for other medical conditions, but in my case, I'm really limited to either hydrocortisone or predisone. I'm taking hydrocortisone, as the side effects are less severe, so I totally know what you mean about picking the lesser of the evils. I think I was on too high of a dose for a while when I first got diagnosed, so that really contributed to the weight gain. I think (fingers crossed) that we've found the right dose for my body, mainly because I stopped gaining weight every week. So, that was progress, but now it's just trying to loose the weight gained. Glad someone else understands, even if it sucks to deal with these issues!

    @ twosclmltars- So interesting that predisone makes you less hungry. I only did a short trial on it, and I don't remember being super hungry. The hydrocortisone is making me less hungry than it used to, BUT, I think the way I've tried to deal with the hunger pain is chewing gum a lot and eating a small snack every few hours. Some days it's really hard though...

    @sempertracy- Did you have a problem with food tasting really bland while cutting out the salt? I find that if I cut out butter or dressing to cut calories, I want to add salt.
  • Jeffswife15
    Jeffswife15 Posts: 2 Member
    Hi, I was diagnosed with primary Addisons Disease in 2005 at UCLA. I have successfully lost weight at times through diet and exercise while on hydrocortisone. Had another baby and I am back trying to lose weight again. I have had low sodium blood results while on steroids. I do not cut back on salt while dieting. Generally, we lose water weight at the beginning of a diet and need salt. The steroids definitely give me a greater appetite. :smile:
  • jjquarters
    jjquarters Posts: 1
    Hi Everyone,

    I am in the same boat as a lot of you. I was diagnosed with Addisons April 2011. I was really sick and lost 30 pounds in 3 months before being diagnosed. Since I have gained it all back plus 10-20 pounds. In January I started counting calories and working out 6-7 days a week. The first couple of weeks I saw weight loss but then after 4 weeks, the weight loss has come to a halt. I will gain 2 pounds and then lose 2 pounds. It is real frustrating!!!!! I am also on Hydrocort and crave salt terribly. It does give me some comfort that I am not alone with this struggle. I also have gained most of the weight around my stomach area. Some people say I need to eat more, most days I eat round 1000 calories after I exercise. I will keep a watch to see if anyone out there can give me some tips that will work to get that scale in a downward movement! Thank you!
  • evileen99
    evileen99 Posts: 1,564 Member
    I have no personal experience with this, but one of my coworkers was on steroids for several years. She did manage to lose/control her weight, but it was hard. She had metabolic testing done at a hospital to know exactly what her BMR was and then was very strict with her calories and exercised like a fiend.
  • yurika975
    yurika975 Posts: 71 Member
    I'm not on steroids so I can't offer help in that regard. However I was thinking that you would have to get tighter with your eating plan and structure your workouts. I was given the advice that I should try to workout as a man would. In other words don't be afraid of the heavier weights. Women have a fear of getting "bulky" but that will not happen with us as we don't have the testosterone that men do. What kind of workouts are you doing? Do you know your breakdown with your diet? Cals/protein/fat? I think starting there would benefit you greatly. It is said that abs are made in the kitchen. Even the fitness models on the magazines don't look like that year round! I think increasing your protein will keep you full and help support your workout efforts. Good luck to you.
  • bishbashbosh123
    bishbashbosh123 Posts: 1
    Hi, I also have Addison's Disease and was recently diagnosed with hypothyroidism. I haven't had any problems with weight gain from medication from Addison's, however I have put weight on with hypothyroidism. Be careful not to cut too much salt out of your diet, although fludrocortisone is supposed to balance salt levels, it well never be as efficient as the genuine hormones. Get you blood pressure checked regularly, if it is low you need more salt! I have been trying to spread my meals and snacks out through the day as we have to be careful with blood sugar levels. Have you spoken with your endocrinologist recently? If you are losing weight, your medication (hydrocortisone) will probably need to be reduced. Hope this helps
  • Cranio97
    Cranio97 Posts: 2 Member
    I too take steriods. I am on long term cortisone use as a result of a pituitary tumour that left me hypopituitary. I am finding it really hard to loose weight too. I loose weight and then if I become ill, I have to go up on my cortef and I gain it back again. It is really difficult, I know.
    Before my disease I was 105 pounds, now I'm struggling to get down from 200lbs. It has been really hard. My self image is shattered! I don't have any suggestions, I am hoping you can give me a few. I can only tell you that I understand your problem. I struggle with the round face, chin and spare tire around my waist.
    Take care!
  • ninerbuff
    ninerbuff Posts: 48,973 Member
    I've had the pleasure of working with many people who have been on corticosteroid for several reasons. My honest response is that since it's a hormonal issue, then it will be much harder to lose and also to maintain once you get there. Unfortunately this is one of the side effects of corticosteroid treatment.
    Just be diligent. Keep up the regimen to help increase fitness and that in tern will help with overall health.

    A.C.E. Certified Personal/Group FitnessTrainer
    IDEA Fitness member
    Kickboxing Certified Instructor
    Been in fitness for 30 years and have studied kinesiology and nutrition
  • BeckyBee78
    BeckyBee78 Posts: 5
    I am so happy to find this post! I have Addison's Disease and Type 1 Diabetes and am struggling to lose the last 30lbs of my baby weight gain. I think I need to be drinking more water... and cutting out the saltier snacks. I really do tend to crave a LOT of salt... especially when it is so hot out!
  • tsagartz
    tsagartz Posts: 1
    So glad to find people in the same boat! I was just diagnosed with Addison's Disease about 3 months ago. I lost about 20lbs before I was diagnosed, and was at too low a weight for me to be comfortable with. However, I've easily regained that weight and extra, especially around my belly. I work out 5 times a week, and admittedly, could do better with my eating habits, but I continue to gain. I'm going to college soon, and I'm afraid the freshman 15 will turn into a freshman 50. Let's hope we can all beat the hydrocortisone weight gain!
  • crazygalsal
    crazygalsal Posts: 1
    I too have Addison's Disease and Crohn's and am still 45 lbs overweight. I don't eat for days(fear of pain and lack of appette) eat very little on days I can and have diahrrea up to 20times a day and Still I can't lose weight. I am on 5mg to 20mg of hydrocortisone for Addison's and during Crohn's flare up I'm on 40 mg to 100mg of prednisone. My weight has also moved from my thighs and butt to my abdomen. I hope we can find an answer because it is really discouraging. My husband is divorcing me due to my health problems and I would like to have more confidence about my body. I am also in surgical menopause and on estro test because I'm only 39. I think I will try to work out like a man as one person commented. Other than that Im at a loss, but wanted to let others know we are not alone even if there are only a few of us.Thank you bishbashbosh1 for info on fludrocortisone. I am going to ask my endo why she hasn't considered this cause I have issues with low salt/ low potassium/low magnesium.
  • lilikinsz
    lilikinsz Posts: 1
    I have ulcerative colitis and I have been on prednisone off and on for years. Right now I am on 28 mg. per day, down from 40 mg.
    I can only lower by 1 mg. per week because my adrenals are not kicking in. I have been on it this time for 18 months. I am moon faced with a buffalo hump around my neck collar. I have lost a little of the weight as I have lowered my dosage, but I think it's mostly due to the discipline of not eating and feeling hungry all the time. It takes almost a year after you stop to totally get rid of the bloat.
    I understand how demoralizing it is and wanted to share with the other readers. I gained a lot of comfort today from reading all the different remarks. I will try to be kinder to myself since I see no one is really loosing weight on the prednisone.
  • skinnylisi
    skinnylisi Posts: 1
    I also have addison's disease and I take fludrocortisone and hydrocortisone. Last year my I told my endocrinologist that I dieted and exercised and wanted to lose weight but had a hard time. She lowered my hydrocortisone dosage and I lost a lot of weight, I was not hungry at all, but I was really tired and the skin on my face was very spotty, like sun spots. I saw my endocrinologist a year later and she put me back on my original dosage of hydrocortisone because of how tired I was, and I gained all the weight back. I do binge eat and prefer salty foods. I lose weight fast but I also gain weight fast. I don't really watch what I eat all the time, if I did I think that I would be succesful at losing weight.
  • mdtprof
    mdtprof Posts: 9 Member
    I have been diagnosed with Addisons around 3 years ago. I gained 15 pounds over and above the 20 I wanted to lose, and that is only because of constant diligence with diet and exercise. The past several months I have been tracking 1500 calories per day, not really paying attention to what those calories were (other than lots of vegetables). I also have hypothyroidism for 10 years. On another site, I saw that people were having some success losing with a ketogenic/paleo diet. I am doing my own experiment with this to see if it works, keeping the calories the same but changing the content. It's so frustrating and no one understands the weight obsession, looking for an answer. I am on 20mg hydrocortisone and Florinef (0.1 I think, low dose). Sometimes I half the Florinef when my bp looks good and I am feeling well. I have suffered with a strange phenomenon, though. Every time I step into my hot tub, even if only for a few minutes, I wake up at2 am with fever, nausea, chills and shaking (addisons crisis symptoms). Dr cannot explain. Any ideas? Good to know I am not alone, thanks so much!
  • sammharley1
    sammharley1 Posts: 39 Member
    I also have addisons. I gained SO much weight when I was first diagnosed - I even stopped taking hydro just because of vanity reasons. Ended up in hospital so much. But if youre on the correct dose, you shouldnt gain weight from them and it should be easy to lose weight too. If you cant, according to my endo, it means your dose is a bit too high. But dont take that from me as I wouldnt want to be responsible for you becoming ill from lowering your dose!

    HATE moonface though!

    I have no idea about your bath symptoms though - maybe your body just doesnt like the up and down bp.
  • sljohnson1207
    sljohnson1207 Posts: 818 Member
    I have been diagnosed with Addisons around 3 years ago. I gained 15 pounds over and above the 20 I wanted to lose, and that is only because of constant diligence with diet and exercise. The past several months I have been tracking 1500 calories per day, not really paying attention to what those calories were (other than lots of vegetables). I also have hypothyroidism for 10 years. On another site, I saw that people were having some success losing with a ketogenic/paleo diet. I am doing my own experiment with this to see if it works, keeping the calories the same but changing the content. It's so frustrating and no one understands the weight obsession, looking for an answer. I am on 20mg hydrocortisone and Florinef (0.1 I think, low dose). Sometimes I half the Florinef when my bp looks good and I am feeling well. I have suffered with a strange phenomenon, though. Every time I step into my hot tub, even if only for a few minutes, I wake up at2 am with fever, nausea, chills and shaking (addisons crisis symptoms). Dr cannot explain. Any ideas? Good to know I am not alone, thanks so much!

    Maybe your hot tub is too hot for you and if you are already on the verge of having too low sodium levels and too high potassium levels, it's sending you over the edge into Addison's crisis? Ask your endo about that. It's not unheard of for hot tubs to exacerbate a multitude of health problems.
  • piezanno
    piezanno Posts: 4 Member
    I'm also on long term steroids for a condition called Pericarditis. Be careful if you lower your dosage (with doctors approval). You can't get off these things suddenly. The best thing is to try to get to the lowest dosage possible. In the last 5 months I've gone from 60mg to 10mg, but the doctor only allows me to drop 5mg every 10 days. Make sure you work with your doctor on this, and discuss with them what are the signs that you may be too low on your dosage.

    If it's any interest to you, Netflix has a 4 part documentary (From PBS) on John F. Kennedy (who also had addisons). and I think he was so active he didn't gain the weight. It's worth it to see how he battled it.

    Do the steroids interfere with your sleep, because if they do, you may be less active because you are too tired and don't realize it. This is what's happening to me.

    good luck
    Karl
  • jenniferlynn0122
    jenniferlynn0122 Posts: 1
    I have Addison's as well - in May I went into severe Adrenal Crisis (was unconscious for 4 days, almost didn't make it... scary). After almost 2 weeks with a steroid IV, I left the hospital looking like a line backer. Now I'm less swollen, but have gained about 20lbs (I take 25mg/day plus levothyroxine for hypothyroidism) so thank you for posing this question! One thing I've learned - don't mess with your meds - always work with your doctor when looking into altering dosages. Also, I know the inclination for most is to cut sodium intake, but don't! You could end up dehydrated which could A. put you in the hospital and B. make you gain more weight. http://www.naturessunshine.com/Blog/post/dehydration-infographic.aspx

    I was told by a doctor to add salt or eat salty foods based on how the food tastes - if you're eating salty food and it taste so good you want more, then you need it. If, on the other hand, it makes you cringe or tastes nasty, you've had enough. I've started eating pickles a lot lately - hardly any calories, no fat and plenty of sodium. I like having them as a post workout snack with a bottle of water. I'm just a week into really watching my calorie intake and exercising, so I can't say if it's really effecting my weight, but pickles are good for your belly (http://www.sharecare.com/health/belly-fat/how-pickles-lose-belly-fat), they fill me up without piling on the calories and they're yummy (to me, at least!)

    I hope this proves even a little bit helpful - but if not, thanks for bringing up Addison's here!!
  • QuilterInVA
    QuilterInVA Posts: 672 Member
    I have been on steroids for respiratory problems all my life. Weight loss was almost non-existant until my doctor told me to go low carb - no more than 50 grams of net carbs and at least 100 grams of protein with the rest of my calories from healthy fats. The weight came off and now it stays off as long as I follow his guidelines. My CBC is perfect and the doc says I'm his poster child for healthy living - I'm 72 years young. I also do water aerobics 5 days a week, yoga 4 days, and weight training 3 days.
  • suzannehoffmann52
    suzannehoffmann52 Posts: 1
    I am also on Cortef brand of steroids, I have MEN2A and I have gained significant weight. I use to weight 115-123 pounds, I am now at 150. I really hate these steroids and would like to end taking them but unfortunately can't. I would love to have some suggestions on how to lose weight. I walk roughly 2 miles everyday, I work out in the gym 2-3 times a week, I don't eat a lot, usually I miss breakfast, have sensible lunch and dinner. I am not sure what to do. Please let me know of a useful suggestions.
  • FocusKimFocus
    FocusKimFocus Posts: 124 Member
    Glad to find this thread! I'm yet another person with Addison's Disease - diagnosed in 1999 at age of 29. I also have Hashimoto's (hypothyroid) and went through menopause in my mid-20s (premature ovarian failure). The health problem that most affects my daily life is that I've been a binge eater since adolescence.

    I have to remind myself that steroids don't have any calories - so if I can find a way to control what we eat, I *should* be able to keep from gaining too much weight. I have done best with a low carb/paleo-style diet. I generally try to eat loads of veggies and healthy proteins. But when I'm in binge mode, its all junk food (high salt, high sugar). I'm hoping those days are behind me now! Sadly, my appetite may always be bigger than is healthy for me. I may just have to accept that.

    I've taken hydrocortisone and fludrocortisone most of the past 15 years, though I'm currently on dexamethasone. My blood pressure is usually on the low side, but not too low. Pickles and Kimchi are great salty snacks for me. I also love smoked salmon and other processed meats (bacon, sausage) ... though those are not such healthy options!

    Unless I get sick from a cold or something, I generally forget about my Addison's. I lost 40+ pounds and got to a healthy weight by calorie counting and wearing a fitness tracker (Bodymedia armband) to monitor my calorie/exercise balance. Unfortunately I've found maintaining weight loss is harder than losing it! At the moment I'm back in the 'need to lose weight' mode.

    Good luck to everyone trying to find the right balance of getting enough steroid without getting too much that we gain unwanted weight. We shouldn't be taking so much that we have a "moon face," and shouldn't be taking so little that we have low energy, darkened skin or other symptoms. :flowerforyou: :flowerforyou:
  • DouMc
    DouMc Posts: 1,689 Member
    Kim, you sound just like me. Except that I was only diagnosed with Addisons 2 and a half years ago.

    Im about at maintenance level and I stopped paying attention to my diet for the last month because i was stressed with college and I gained back 10lbs!! Now I am getting worried that maintenance will be really hard for me.

    One thing that I find difficult with the dose of dexamethasone is when I am doing something more active than normal. For example, in march I did a 5km mud run and about half way through it I just crashed. I barely made it to the finish line and it took hours for me to stop shivering. I asked my Endo about it later and she said I should have taken an extra dose beforehand. But I don't always know when something is going to be taxing enough on my system to need the extra dose.
    Anyway, that's just a bit of a rant and something I need to figure out myself.
    Its great reading how other people with addisons are getting on.
  • 0137111719
    0137111719 Posts: 1 Member
    If you're gaining significant weight in fat you're probably dosing too high. The electolyte balance problem with Addison's is due to insufficient aldosterone rather than cortisol. Hydrocortisone has only a partial mineralocorticoid property whereas fludrocortisone is all mineralocorticoid. If the doc has set your HC dose high enough to prevent hyperkalemia or hyponatremia it will be too high. I take the absolute minimum of HC and take fludro for electrolyte balance. If I crave salt or feel dehydrated I raise the FC rather than HC. My HC dose is very low (annoys my doc) and I still have to watch my diet.

    Be aware that if minimizing HC you have a lower margin of safety in case of illness or injury. Rule of thumb becomes triple dose for illness rather than double dose. A blood pressure monitor helps assess hydration. This is not medical advice, YMMV, etc...

    Best,
    Primes
  • queenliz99
    queenliz99 Posts: 15,317 Member
    0137111719 wrote: »
    If you're gaining significant weight in fat you're probably dosing too high. The electolyte balance problem with Addison's is due to insufficient aldosterone rather than cortisol. Hydrocortisone has only a partial mineralocorticoid property whereas fludrocortisone is all mineralocorticoid. If the doc has set your HC dose high enough to prevent hyperkalemia or hyponatremia it will be too high. I take the absolute minimum of HC and take fludro for electrolyte balance. If I crave salt or feel dehydrated I raise the FC rather than HC. My HC dose is very low (annoys my doc) and I still have to watch my diet.

    Be aware that if minimizing HC you have a lower margin of safety in case of illness or injury. Rule of thumb becomes triple dose for illness rather than double dose. A blood pressure monitor helps assess hydration. This is not medical advice, YMMV, etc...

    Best,
    Primes

    Sounds like medical advice. So, op disregard this. And let me add, holy moly necro thread!
  • trigden1991
    trigden1991 Posts: 4,658 Member
    This thread is not what I expected from the title .............
  • JenniferNoll
    JenniferNoll Posts: 367 Member
    I have crohn's disease. Before my diagnosis, my weight would fluctuate between 112 to 145 until my diagnosis on 32nd birthday. At one point I was on 80 mg of prednisone a day for almost 6 months. I got to 217 pounds. My doctor decided to try me on humira, and that stuff was like magic. I'm off the steroids, and my weight loss is very, very, very slow. I will be having gastric sleeve surgery in a couple of months to finally get the weight off. For me, trying to lose the weight while on prednisone was just not possible.

    I know that we have two different diagnoses, with two different treatments. I can only wish you the best.
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