Worried about gaining weight on prednisone

[Cobalt2sister]

I've only been on prednisone a few weeks for GCA but been dieting like crazy to avoid weight gain. But I also worry I'm not eating sufficiently. Cut out salt, sugar and carbs. Any ideas? Mostly vegetables, salad, yogurt and fruit.

[Kendrew]

Hi Cobalt2sister,

Firstly, I'd recommend looking in FAQ'S under 'W' for Weightgain. Some info and personal experiences to be found there.

Unfortunately, as I've discovered during my 3yrs on pred, preventing any kind of weight gain can be quite challenging, although not impossible. It's not about 'how much' you put in your mouth but what you put in your mouth.

Pre-pred I could lose any surplus weight by simply cutting down on the volume of food I ate.... and cutting down of course on sugary and fatty foods too. I'd still eat wholegrain bread, rice and pasta though and weight loss would follow..

Taking pred is a whole different ball game and for those who succeed in maintaining a healthy weight it usually involves following either a full keto diet or at the very least a very low-carb diet.

When you're taking pred, the body metabolises food in a completely different way....sugar (including natural fruit sugars) are deposited more readily as fat, and that fat tends to accumulate in areas such as the stomach & midriff, the face, back of neck, etc. This is a greatly simplified version of the 'process' and others with more knowledge will be able to explain in further detail if required.

My personal experience has been one of a 'slow burn'. For the first 12mths I was on pred my weight didn't alter too much but gradually over time it began to creep up, and 3yrs down the line I'm 10lbs heavier than pre-pred. I know this is far from being catastrophic but a lot of my clothes now feel too 'snug' to be comfortable and I would prefer for my weight to not increase any further. I've learnt much about how to keep the weight gain under control from people on here and I now follow a low carb rather than a no carb diet.

I also have very high cholesterol (now managed well with statins) so this means keeping my intake of saturated fats at a sensible level......often a keto diet involves removal of foods with a high sugar content for foods containing more fats, such as cheese, red meat, bacon, butter etc. (If you're not getting your energy from carbs then you have to find an alternative source - this would be fats) Therefore I have to balance out my own individual health requirements and make some compromises.

My diet consists mainly of chicken, fish, salads, low carb veg, low carb fruits, porridge oats, and healthy fats sourced from foods such as nuts & seeds, avocados, some dairy etc. I rarely, if ever, eat pasta, bread, rice, cakes, pastry etc anymore.

I also engage in gentle exercise most days and together this has so far allowed me to maintain a steady weight of 10 stone for the past 12mths.

Our own individual dietary weightloss measures will differ according to our own accompanying health issues and what works completely for one will probably need to be 'tweaked' for another.

Although maintaining a healthy weight whilst on pred will prove more of a challenge for some than others, there's much we can do to facilitate success but it does take determination, patience and a certain amount of discipline.

I hope this is helpful and good luck.

[Cobalt2sister in reply to Kendrew]

Thanks. Very helpful.going to look into keto diet as I'm not familiar ( though I saw yogurt that said it was keto. Really forgot the fats, like nuts. I use some olive oil on my salad. Important about b complex another thing I didn't realize. Peoples responses have been helpful and ill eat more responsably. Thanks. Take good care.

[Pixix in reply to Cobalt2sister]

My story is on FAQs & much more info on there, too. I tried the keto diet & lost a stone in 5 or 6 weeks!

[SnazzyD]

Hello, if you really are cutting out the carbs then you should be ok. I would add in a good amount protein and fats, especially veg based oils. I took a vitamin B complex because of the lack of whole meal grains which did anyway because of having to be gluten free. I ate so much in the the days of high dose as long as it was veg or protein but it was ok. Some people need a bit of carb but you’ll have to see, but be very honest about what you’re eating. I was able to have two bits of 85% dark choc a day and two small glasses of white wine a week with no ill effect.

[Cobalt2sister in reply to SnazzyD]

Thanks for b complex tip..important. Tiny dark chocolate once in while will keep me happy!!! That's the only sweet I miss. Fruits are high carbs tho, right? Which fruits are best as I find they also help to keep me satisfied? Hope you're doing well and take care. Thanks. This is all so new to me. Thursday I see my Neuro ophthalmologist and will let people know what the update is.thanks again, peace.

[Koalajane in reply to Cobalt2sister]

Berries are the best fruits to eat. I eat blueberries

[Cobalt2sister in reply to Koalajane]

I have some frozen berries I used for smoothies ( not making them anymore). Frozen ok or should they only be fresh? Thanks. Take good care.

[PMRpro Ambassador in reply to Cobalt2sister]

Fresh and frozen have almost identical nutritional value. In some cases, frozen is better as freezing stops degradation of the vitamins.

[SnazzyD in reply to Cobalt2sister]

I had an apple a day an occasional half almost green banana (if I thought my potassium was low - cramps) and 4 grapes or so, or an orange. However my fruit was mostly berries which are lower in sugar, which I had with unsweetened coconut yoghurt because I had to be dairy free anyway. Can’t face it now because i ate it daily for 3.5 years. I bought frozen berry mixes. My main goal was to keep my blood sugar down which was measured with an HbA1c test that gives you a 12 week average.

Be careful of just looking at weight because to a greater or lesser degree you’ll lose weight from the muscle loss effect of Pred. Also, sorry to say that likely you’ll get the moon face and plump belly shape anyway because Pred causes redistribution of what fat you have to the most inconvenient places. It’s temporary but annoying.

[Cobalt2sister in reply to SnazzyD]

Thanks. Gave me a better view of what and how of fruit eating. Ill concentrate in berries. Interesting about muscle loss. Yikes! My leg muscles often feel weak but when not so bad I do try to walk as much as possible. My blood glucose went to 153 when shouldn't be higher then 99. I do tend to run high normal before even though I don't have lots if sugar in diet. I was doing some part skim mozzarella to add to my salad but maybe I should be careful I chose mozzarella because its lower sodium and I'm careful with sodium now. Ill let you know when my face ' moons out'. I'm on 80 pres now but probably begin to taper Thursday when I see doctor. Thanks for your help. Be well and gapoy.peace,

[SnazzyD in reply to Cobalt2sister]

It’s not just sugar but foods that are converted to glucose, the carbs. The more refined the bigger the glucose spike. Normally without Pred, it’s enough to give up just sugar but for many ‘normal’ people the extra potato has to go. Don’t go too low fat because a) you won’t feel so sated and b) you need it to help absorb fat soluble nutrients, especially vitamin D for your bones amongst other things.On 80mg you will feel weak and rubbish. Even on 40mg I felt I had to move in slow motion. Don’t worry, it will get better as the dose improves, just hang on to that.

[Cobalt2sister in reply to SnazzyD]

Thanks for encouragement. Yeah I've been doing fat free yoghurt. Perhaps better to do some 1 or 2% sometimes and per responses I'm going to add few nuts. I do use olive oil. Thanks

[PMRpro Ambassador in reply to Cobalt2sister]

Switching to 2% fat yogs, even 5%, and using natural/plain (whatever you want to call it) unsweetened yog/kefir and adding your own flavouring is a help - flavoured low fat yogs are rarely low carb as they add all sorts of stuff including sugar to make it taste "better" (i.e. sweet)

[Cobalt2sister in reply to PMRpro]

Good to know about recommended %. And yes, I only use plain yoghurt. Thanks.

[SnazzyD in reply to Cobalt2sister]

The opinion of fats is not so anti these days especially veg oils. The history of how fats became so demonised and is interesting. For what it’s worth, with you being on 80mg with all the brain fog, here is an interesting bit about the complexity of an argument that isn’t black and white as marketing suggests.

aocs.org/stay-informed/info...

[Cobalt2sister in reply to SnazzyD]

Will read. I didn't realize the shift in thoughts about fats. Will increase my avocado! And continue olive oil. Thanks.

[Chickswim]

I have been on Prednisolone for twelve years and have gained no weight at all. With a view to getting off it I saw a nutritionist who advised me to give up sugar amongst other things. I am now losing weight! I didn’t want to lose weight but sugar is a poison and I do feel better for it.

[Cobalt2sister in reply to Chickswim]

Wow, 12 years! What a challenge. How did you manage side effects? You're right, sugar is poison and any time I've cut it out I feel so much better. I remember years ago reading book "Sugar Blues" and it does make me low and sluggish. A nutritionist good idea as between only 2 HR sleep a night and limited food I worry about making self sick. Please be well, good luck and thank you.

[Chickswim in reply to Cobalt2sister]

I have autoimmune hepatitis and so I was put on pred and then was tried on all immunosuppressants possible to try and get off it. They all caused worse problems. Eventually I have said I would rather die of the illness than the medication. So I am slowly reducing the pred and am actually feeling much better! Whether it is the sugar or other alterations to my diet I do not know but I will keep at it. Good luck to you too. You are in my prayers. x

[Cobalt2sister in reply to Chickswim]

Thanks for prayers. Hope you feel better. Good luck to you and likewise in my prayers.

[Chickswim in reply to Cobalt2sister]

Thanks. Sometimes praying is all you can do.

[Cobalt2sister in reply to Chickswim]

Agreed!

[Chickswim in reply to Cobalt2sister]

I meant to say - the main problem I have because of pred is osteoporosis. High doses do keep me awake but my illness makes me very tired so it’s not too bad.

[Cobalt2sister in reply to Chickswim]

I'm worried about that too. I have osteopena and a bone scan next month. Years ago I was fosomax then Boniva but stopped it ( now I forget why but there was a reason). I had 2 broken bones and 2 stress fractures..so am concerned. What dose predinisone were you on? How are you doing? Sorry for your fatigue. Hope you feel better soon. Thanks for sharing.

[Chickswim in reply to Cobalt2sister]

My prednisolone dose has been up and down for years as my liver readings go up and down. I was originally on 50mg but recently a maximum of 20mg. But now I am on 4.5mg and reducing very slowly. I have been on various treatments for osteoporosis but am now having a yearly infusion. Fortunately I have had no fractures. Hope all goes well with you.

[SnazzyD]

I existed on naps and the sleep does get better as the dose drops.

[Cobalt2sister in reply to SnazzyD]

Good to know. I get 2-4 hours a day but sometimes can get in a 20 minute " power nap" and that seems to help. I can only sleep one hour at a time at night. What is that doing to my health I wonder!! Thanks. Takes goid care.

[SnazzyD in reply to Cobalt2sister]

It is what it is for now. Stressing about that won’t help you at all. The best thing you can do is not try too hard to keep your daily routine, prioritising rest instead even if you feel jittery. The trouble is that high dose Pred is it can weaken you, exhaust you and make you over active. I also found in the early weeks that if I did very much of anything my symptoms hovered in the background. Remember Pred is an inflammation safety net, not the cure to prevent the autoimmune activity that makes it.

[Cobalt2sister in reply to SnazzyD]

Thanks. Yes, I need to not stress!

[PMRpro Ambassador]

Bulk is also important to reduce the hunger pangs. I eat large bowls of leafy salads and cucumber and often just early afternoon that keeps me happy until dinnertime.

And often we feel hungry because really we need fluids so drinking plenty of plain water is good too. Often if you feel hungry, getting a drink of water and finding something else to do for 15-20 mins is enough for that craving to pass.

[Cobalt2sister in reply to PMRpro]

Oh thanks. Bulk and fluids good tips. I'm not a big water drummer so ill work on that. Have a god day

[Sharitone]

You haven't cut out all salt, have you? Because you do need some!

[PMRpro Ambassador in reply to Sharitone]

You'd have to starve to cut out all salt - sodium is in most food - though it is added salt that needs to be cut.

[Sharitone in reply to PMRpro]

My daughter's colleague decided to cut all salt, presumably eating low salt items and ended up in a coma. Only just made it.

[PMRpro Ambassador in reply to Sharitone]

Was there an underlying illness? A healthy young person should manage OK - as I say, loads of salt in most food which is where the problem lies.

[Sharitone in reply to PMRpro]

No, but I think he did take it to extremes. It was a kind of eating disorder.

[PMRpro Ambassador in reply to Sharitone]

Ahh - went mad did he? I had 2 family members with eating disorders - nightmare! Only one I have is liking food too much ...

[Sharitone in reply to PMRpro]

I believe that's normal?😉

[PMRpro Ambassador in reply to Sharitone]

You'd hope ...

[Cobalt2sister in reply to Sharitone]

Good grief! Is she doing alright now?

[Sharitone in reply to Cobalt2sister]

Yes, I believe so, though it was a close call.

[Cobalt2sister in reply to Sharitone]

I cut out much salt. Not sure how much I need or what to eat to get right amount. Ill have like 1 oz of mozzarella cheese and some things say like 25 mg sodium. What should I am fir? Thanks.

[PMRpro Ambassador in reply to Cobalt2sister]

Google it and you will find all sorts of advice on recommended daily amounts.

[piglette]

When I started on steroids I was told cutting out gluten and simple carbs would stop me getting a moon face. It did actually work and my weight stayed much the same.