Anyone else lost weight on long term steroids?

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  • piezanno
    piezanno Posts: 4 Member
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    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
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    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
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    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
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    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
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    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
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    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
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    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
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    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
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    This thread is not what I expected from the title .............
  • JenniferNoll
    JenniferNoll Posts: 367 Member
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    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.
  • mindypearce
    mindypearce Posts: 2 Member
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    I just posted on the "introduce yourself" forum...I was diagnosed last week with adrenail deficiency....afraid to become sick after speaking with my Endo nurse..and I have a surgery coming up in April that I wasn't worried about til now..it will be laparoscopic...I'm also afraid to eat bc of all the weight gain stories. My job requires me to be around kids all day and I read hydrocortisone weakens the immune system...great!! Am I going to ever be normal and not,have this on my mind day and night? I wanted to begin exercising..but afraid it will be too stressful on body....can you slowly get off steroid once I am leveled???
  • gleggio
    gleggio Posts: 10 Member
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    mindypearce-You would have to speak with your endo to find if you can ever get off steroids based on your diagnosis. It took me a while to stabilize my mess when I was first diagnosed 26 years ago with Addison's Disease and Hypothyroidism. I will never be off corticosteroids. Now, I feel lucky that all I have to do is take my meds in the morning and I forget it otherwise. I may get a touch more tired at times (which could just be age ;) but most of the time I feel pretty normal.

    I was a teacher for all but 4 years of having Addison's and didn't feel it caused me to get sick any more-in fact for 5 years I didn't miss a day from illness. The only time I've become seriously ill is when I had the flu and went into Adrenal crisis (I was so out of it, I didn't take extra meds). I retired in June of 2016 with 30 years of teaching but am work camping as we travel in an RV.

    You do sound worried-it's more the unknowns, it seems. It is a shock to receive the diagnosis-I still remember. But I've lived with it for a long time. I take care of myself, eat pretty good- but enjoy life. I eat around 1200-1400 calories most days of filling but not high caloric foods and higher on days when I want to enjoy pasta and dessert. It's tough keeping the weight down with being female, past menopause and taking corticosteroids. If you have any questions, please feel free to message me.
  • lisakarenza
    lisakarenza Posts: 76 Member
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    My 11 year old daughter takes steroids 4 x daily . I'm very wary of her weight as I'm overweight so making sure her diet is healthy and she exvercises . This thread has just made me realise it's probably the steroids & growth hormones she takes that aren't helping !! Not alot we can do though, she's not overweight now,we will just have to always keep an eye on it I suppose x
  • sonitabird
    sonitabird Posts: 1 Member
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    Hi there, Most of the folks here seem to have Addisons. I have respiratory ulcers and chronic uncontrolled inflammation. The doctors can not figure out why so they just give me prednasone. FRUSTRATING!!
    I started the Keto diet to control the inflammation and loose weight from the prednasone. I am also a nutritionist, chef, and past personal trainer I might add, so I do understand food. I do NOT understand PREDNASONE!! (despite a ton of research)
    I have been taking Prednasone over the last two years and put on 30lbs total- I am 5'7.
    I started KETO/LCHF Jan 2 and before starting, my asthma- breathing was doing great, I was down to 5mg of prednasone. When I started KETO The weight started to fall off, Today- Jan 27th I am at 190- loosing 15lbs. total- so I am happy, but I seem to be stuck at 190lbs.
    I have had to increase my prednasone to control my breathing to 10mg (Jan 15th) and it is still not controlled. The scale stopped moving on Jan 15th!!! The day I had to increase my prednasone.

    I am doing intermittent fasting, I finish my dinner at 6pm and do not eat until 1 the next day. I do bullet proof coffee in the morning. My calories are total 1300 per day. I have kept my carbs below 20g, most days only consuming 15-17. I am not hungry, I am exercising daily. (barn chores, lifting 100lb bales of hay, mucking stalls, walking my dog 40 min.)
    I am BEYOND frustrated. I do feel the inflammation is /has gone down a bit as I am not as puffy when I get up in the morning, feet, hands, face.

    ANY HELP OR ANY INSIGHT AS TO WHAT IS HAPPENING WITH THE PREDNASONE WOULD BE WONDERFUL!!!

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