Myasthenia Gravis News Forums Forums Life Hacks and Tips Managing Prednisone Weight Gain

  • Managing Prednisone Weight Gain

    Posted by BioNews Staff on January 26, 2023 at 8:00 am

    MG columnist Shawna Burns recently wrote a column about managing weight gain due to prednisone. 

    I gained a significant amount of weight when I was taking 60mg of prednisone a day. I made some attempts at dieting while on the medication, but it felt like I could never make a dent in my weight.

    If you’ve ever been on prednisone, did you gain weight? Did you try to lose it while still taking it? Do you have any successful tips for those who are trying to lose weight while taking prednisone?

    MikeS replied 1 year, 4 months ago 15 Members · 12 Replies
  • 12 Replies
  • Lise

    Member
    January 27, 2023 at 2:50 pm

    I’ve notice I’ve started gaining I’m on 20mg a day

    • Andy Coyne

      Member
      February 16, 2023 at 9:41 pm

      I was put on 40mg daily and rapidly gained 50lbs. Now down to 10mg a day but finding it nigh on impossible to lose weight. I tried just after Christmas and lost about 10lbs but the cold weather and dieting was crucifying! It’s getting a little warmer now so will have another go in the spring.

  • Marie M Hammond

    Member
    January 27, 2023 at 8:54 pm

    I started out at 30 mg a day when I was diagnosed 11 years ago and I gained 30 lbs within three months.  Trying to cope with the diagnosis and the hungrier appetite was too much.  Trying to diet during that period was not good.  However, fast forward to this period of time and the lesser amount of prednisone 2.5 was the key.  I was able to lose 60 lbs because timing was the key.  Recently, my MG came out of remission and became active again when I had to take a large dose of prednisone for a procedure.  So, my prednisone went up twice trying to fix that and the appetite is back.  Drinking water seems to help but try to consume most of that in the AM or you will spend all night up and down going to the bathroom. I will tell you my previous weight loss was due to a program that had a structured diet and I paid a subscription to belong.  Hope this gives you some hope.

  • Earl Pendley

    Member
    January 30, 2023 at 2:03 pm

    i to am struggling with my weight. i’m down to 10mg a day and now on Vyygart which is great..As soon as i’m stable im going to 10 every other day. totally sucks this weight problem.. not to mention the anger that seems to be lurking right under the surface.. its a tightrope we walk but we could have something worse.  ugh

    -the duke of earl

  • George Kesterson

    Member
    January 31, 2023 at 2:27 am

    I was on 60 mg and put on about 75 pounds over 3 yrs. Now off of Prednisone completely now for about 3 more years and have managed to only lose 30 pounds.  Hope you do well.  Got of when I was put on Solaris.

  • David S

    Member
    February 1, 2023 at 5:16 pm

    10mg/day of Prednisdone.

    Tried a number of eating plans over the last few years and have decided to do Nutrisystem.

    We are doing the partner plan and hope to lose 30/40 lbs.  All gained since having gMG.

    I think the biggest problem is lack of calorie burning exercise.  We were fairly active b/4 the disease hit.

    Scott

  • Debbie Butler

    Member
    February 1, 2023 at 9:16 pm

    I was on 100mg a day and gained 50 pounds in 60 days.  The first thing I did was stop all salt and all fried/greasy foods.  I was on Prednisone for 11 years … finally got off it.  I lost 35 of the 50 pounds in just a couple of months.  I’m at a good weight now, I was too skinny before.  I have stayed off the salt and fried/greasy foods for 30 years and I don’t miss them at all.  Everything goes in the oven or the crockpot.  Good luck everyone.

  • MikeS

    Member
    February 2, 2023 at 1:29 am

    I gained 30 lbs during my most recent MG episode that started in July ’22 when I was put on 40 mg prednisone. Once all the sugary food in my fridge and pantry was consumed I was able to halt the weight gain. I still get strong food cravings in the evening but at least I’m not satisfying them with sweets any more. I’m now on 20 mg and am hoping the cravings will stop soon, as my prednisone is decreasing 5 mg each month. I guess you could say that half the battle is just getting the weight gain to stop. At some point I hope the cravings will come under my control and I can successfully return to a more reasonable weight.

  • Mark Shear

    Member
    February 2, 2023 at 2:07 am

    I also gained 30 pounds but have been able to lose weight (same 30) while on prednisone. Here is what I did most is not a special thing I came up with but are  tricks I learned from others over the years.

    1. stay close or stick to a Mediteranian diet. Low in fats and lots of good stuff to eat.

    2. drink water or other fluids throughout the day particularly when you feel hungry between meals. This helps a lot. Diet drinks become more of a treat and provide a caffeine kick during the day. I drink enough water at dinner that I can just take sips of water if I wake up during the night (to pee or so the dogs can go out to do the same).

    3. Snack healthy to snack at all. Pickles or other pickled foods are crunchy and savory. A handful of nuts are crunchy and salty.

    4. Portion control is a big help. Drinking water along with or before the meal helps quench hunger.

    5. Be good to yourself, if you have a big or calorie filled meal, there is always tomorrow to diet again.

    6. Avoid fried foods. Try roasted veggies that you like.

    7. Weigh yourself at least once everyday. This is a big help to me as I can see how I am progressing and it helps me set daily food intake goals. Be sure to weigh at the same time for one of them daily, preferably after you have gone to the bathroom, have minimal clothes on or you can guesstimate what you are wearing weighs as part of the fun. I t is fun to weigh at night guess what you may lose during the night and then weigh in the morning and see if that is accurate. This all helps me manage the days calorie intake.

    8. Realize the first 10 pounds is the easiest, the rest takes longer and if you understand that will keep you from being discouraged.

    9. I haven’t been exercising to lose this weight either because of MG brought on fatigue or laziness, not sure. Not a big exerciser anyway but it is healthier to exercise the best you can.

    10. Set calorie burn goal in your Apple Watch, mine is only 400 calories a day. I don’t usually make that but it feels good when I do.

    11. So go easy on yourself to go good. it may be more sustainable for you as it has been for me.

  • Jonathan A

    Member
    February 2, 2023 at 10:43 am

    The only way to stop the weight gain is to    … GET THE HELL OFF OF PREDNISONE.  You need to find a knowledgeable “old-school” doctor, who can taper you off of it successfully.  I also was on 60 MGs daily, in addition to over 5000 MGs of other meds, daily … at home after I was released from the fifth hospital of 2020 on Black Friday 11-27-2020.

    For 8 long suffering and toasted muscle strength months, not a single doctor could diagnose my ACUTE  OCULAR  AND  GENERALIZED  MYASTHENIA  GRAVIS  illness.  I was finally diagnosed by a very intelligent and experienced third floor nurse, who recognized all my MG symptoms  … and talked outside doctors .. into giving me a NEURO-CONSULT and also THYMUS/ANTIBODIES TESTS.

    Because every doctor did not know I had MG, they gave me STATINS too.  THE STATINS and STEROID PREDNISONE gave me medically induced DIABETES II and scores of   … 350, 400, and HIGH.  At the fifth hospital, they stopped the PREDNISONE, and a new doctor tapered me off LANTUS products, so my MG and DIABETES II both in REMISSION.   The only thing that saved me from BALLOONING UP  … is that  … being undiagnosed with MG, I lost over 43 lbs in the first 6 months (198 to 155),   … and even more the next 2 months, so all the Prednisone got me back up to 196,  BUT I lost all my muscle tone, and was on ENTERIC and PEG TUBE feeding for over three months in three different hospitals for the first 4 months, losing even more than 43 lbs..

  • Phillip

    Member
    February 2, 2023 at 2:27 pm

    I was able to lose 75lbs on the Keto diet and intermittent fasting prior to my MG diagnosis. I recently started with prednisone and I’m very concerned with weight gain and ocular hypertension. I’m at 50mg 1x a day and going to 60 mg in a week or so. I’ not seeing any benefit from it and I’m hoping to get off of it ASAP and try something else.

    • Andy Coyne

      Member
      February 16, 2023 at 9:44 pm

      It can take a good few weeks to see the benefit of prednisolone up,to 3 months I’m told. Most physicians make the mistake of starting in too low a dose!

  • michail

    Member
    February 5, 2023 at 2:23 am

    Most time of the last four years I was taking 15-25 mg of prednisone daily. My weight was relatively stable, I gained at most 5 kg in that time period (from 113 kg to 119 kg), but I was really fat, with BMI 39. Last year, when my MG improved, I started a gliders pilot course, and discovered that there was a weight limit of 103 kg. So… I lost 7 kg in 45 days, 17 kg. in 5 months, and now I am at 99 kg (-20 kg) after 9 months. After reachinhg the 103 kg legal limit, the weight loss became more complicated.

    To loose weight:
    You need motivation.
    You do not have to do some special diet (all of them are meaningless fads)
    You have to eat less calories than you use.

    Basically, I could not increase calories expenditure (long excercise with myasthenia is really out of question), so I had to reduce calories intake. At outset I calculated (using online calculator) the calories needed to maintain weight (3000 for 120 kg and my exercise/life style level), and then set a limit of 2200 calories. A deficit of 800 calories was equivalent to about 100 grams weight loss per day.

    I was eating anything I wanted, but at each meal I was calculating the calories, and once the 2200 limit was reached, it was game over till next day…

    To summarize:
    YOU NEED MOTIVATION
    YOU HAVE TO RECOGNIZE THAT YOU ARE FAT (not obese, not overweight), FAT, FAT, FAT
    SHUT YOUR MOUTH

  • Charl

    Member
    February 5, 2023 at 10:04 pm

    I started out with 30 mg. This site is wonderful. I’m 76 yrs old. Now I am down to 5 mg. Beside weight gain my biggest problem is depression over the weight.  I probably gained 25/30 lbs.  I’m only 5ft. I’ve been on Pred. For almost 5 yrs. I can’t seem to lose. Very distressed.

  • Donna J McCauley

    Member
    February 12, 2023 at 11:27 pm

    I’ve been on predisone for some time now d/t my MG.  I started on 20 mgs, presently on on 5mg. But i gained weight about a few months after  i was on it. With the predisone, i come to a conclusion, if i can maintain my weight without gaining any more then i already have, I’m not getting to mad at myself.  I tried to take a walk today, 10 blocks and i was exhausted! I do keep moving as much as i can.  I know i”ll have a bad day because i walked to far. But that’s part of the ride.  Try to find people in your life that is positive and know what your going through.  I know i can get get myself pretty far in the dumps, when i can’t even pick up my 6 month old grandchild.  I guess i tell myself that i’m blessed that i’m here, and still able to interact with them. My positive friends are always there to listen. Hope that you are able to find someone that will keep your spirits up, and sometimes just listen.

    Number #20711 you really need to get a better attitude, keep your negative attitude to yourself of get some help somewhere!

  • Michele Ayers

    Member
    February 16, 2023 at 2:07 pm

    I gained quite a bit of weight when I was first diagnosed and put on 30 mg. of prednisone. And my face “fell down”..or is that the mgravis?

    I’ve been fortunate to reduce my prednisone (which is discouraging to my left eye as it closes around 4pm) but it’s worth it. The mestinon was also dropped due to side effects.

    I don’t agree with the “FAT” suggestion…it is very difficult…but simple steps…and loving yourself…

    I agree with increasing water, walking..or some other exercise you can do..and having fun!..a hobby..an interest..oh, and doing things for others..seriously..food is on my mind ALL the time…so anything to get myself busy helps…but busy can be fun…reading a book..counts too!

    and YES..I was always STARVING while on prednisone at the higher dose…I couldn’t believe how much I could eat and still feel so hungry! Good Luck!

    You are not alone!….and you are beautiful..weight is not a measure of beauty!

  • MikeS

    Member
    February 18, 2023 at 2:21 pm

    As mentioned above, to lose weight you have to consume fewer calories than you use. It’s really not complicated; fewer calories and more healthy food is what you need to control.

    The hardest part (for me) is the constant craving and hunger, no matter how much I just ate. I found that happens when my Prednisone is 30mg or higher. Between 20 and 30mg the craving starts to wane, making it easier to control my diet.

    I’m currently at 20mg waiting to reduce to 15mg next month. I’m hoping I can then start to actually lose some of the 30 pounds I gained over the past seven months.

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