Managing prednisolone weight gain and bloating - some ideas

[CloudGazer6]

The others have said some very useful things about managing with the weight gain and body shape changes. I have also been doing quite a lot of research into this as I wanted to find a plan that might suit me but also let me not beat myself up if I wasn't able to be really strict with myself. I couldn't find a single source of information so gathered quite a few different details together. So far I've managed to keep the weight gain on high dose steroids for GCA (60mg then 40mg) to 1-2kg (depending on the day), and I'm definitely no saint when it comes to food temptation. 

In case this is of help, what I've pulled together is: 

1. The weight gain and body shape changes on prednisolone are due to increased appetite that is difficult to resist, water retention and a redistribution of body fat into areas where we notice it (abdomen, back and base of the neck and face), and we know that others might notice it too. 

2. Reading about fluid retention and prednisolone, I decided to reduce sodium in my diet and increase the potassium, and make sure I drank a bit more water throughout the day. I have noticed that when I have meals with more potassium the bloating is better the next day. This is my favourite source of information about high-potassium foods: 

webmd.com/food-recipes/high...

3. Having frequent small meals has worked well for me. It makes the hunger cravings easier to manage and has let me work out the pattern of cravings in relation to the release of the drug into my system across the day. I've found that adjusting when I eat to my prednisolone-dictated schedule is much easier than feeling the steroids are controlling what I do. I wake up early and have some instant porridge with almond milk (skimmed milk is also good) at about 5am, go back to bed, then I have my medication around 8am with something light so I'm not having the tablets on an empty stomach. I get really hungry about 11.30am so that's when I have the first half of my lunch. I have the second part of my lunch at around 3pm, and a snack at about 5. By the evening the cravings are lessening a bit so my evening meal is almost at a normal time. Someone here recommended a tiny bit of a higher fat ingredient to help with the cravings and that certainly seems to work with me. I think it may trigger the satiety part of the brain that tells the stomach it doesn't need any more food. 

4. I have switched from simple carbs (pasta, rice, white bread) to complex wholegrain carbs and reduced them overall. I've substituted lots more protein and vegetables. It's hard when you're feeling ill to cook a lot but I give myself a break and sometimes buy a few of the healthier ready meals to make sure I don't give in to my love of pasta too easily. Dietitians recommend lots of variety in terms of ingredients and flavours to keep people from becoming de-motivated, so I try that too when I'm feeling up to it. 

5. This link might be helpful (ignore the references to chemotherapy - the prednisolone/steroid references are probably just as relevant to all its uses in terms of weight gain) 

dana-farber.org/Health-Libr...

6. Oh, and yes, I have treats. It's hard enough to have everything else going on and manage the mood changes that sometimes come with the pred. A square (or two) of dark chocolate or a couple of crisps now and then help me stay on track, oddly. 

[Polylinc]

Thanks CloudGazer6 

I am pleased that others responded too, as the information that you kindly detailed will be of great help to many on the forum.

I will print it off now ... Thanks again 

[Moilen]

Interesting info CloudGazer6 & I couldn't relate to it. I got my diagnosis July last year and started on 60mg prednisolone too. I'm now on 7.5mg and has been lucky in that my weight is only about 3 or 4pounds above my ideal. I always have my steroids straight after breakfast, couldn't do the eat and back to bed thing that you do. I do however also get hungry mid morning so have a snack then and again mid afternoon. Interesting that you say you have a couple of crisps- I can now make one bag last about 3 days but having one or two crisps seems to really perk me up at times. 

[Greensleeves]

Very helpful Cloud thank you . I've been on pred since the end of 2012 , I've been up and down since then and am currently on 5 mg and fighting a flare after a 5 mile walk and stress  . All my fat is on my stomach and it's the debilitating tiredness that I feel is stopping me from exercise. Even gentle exercise makes me sweat and feel breathless. It isn't good as my appetite hasn't increased . x

[PMRpro Ambassador in reply to Greensleeves]

I found when I cut carbs drastically it was the midriff fat that went first.  It is worth trying - it also helps reduce the risk of pre-diabetes.

However - to be frank, if you can manage a 5 mile walk than I don't think you can complain too much about not being able to exercise. Many patients cannot manage a mile! If the autoimmune disorder that is the underlying cause of PMR symptoms is still active then your muscles remain intolerant of acute exercise and care is required. I find I can do far more if I do things in smaller bites with rests between - I know it isn't quite the same if you want to go out for a long walk, but doing 5 one mile walks with breaks achieves the same.

And it is quite possible that the "debilitating fatigue" is not the PMR but the fact that your adrenal glands have not yet started to function properly. Has it increased since reaching 7mg and continuing to reduce? If so, be patient. if it doesn't improve, ask your GP to consider doing a synacthen/ACTH stimulation test to see if they are capable of producing cortisol - that is one factor. then you need to creep down the dose until the adrenals are functioning well. Even after stopping pred altogether it can take a year for that to happen.

[Greensleeves in reply to PMRpro]

I have cut carbs out completely apart from my gluten free muesli . 

I took your advice and am eating more as I was eating too little and my body was probably in starvation mode as my limbs are slim . 

I hadn't intended on doing a 5 mile walk, a small stroll with my friend and her dog turned into a 3 hour hell . 

I've been on 5mg for a long time now apart from a mini flare a few weeks ago and I'm pretty sure my adrenals haven't woken up . 

I will ask GP about that test . 

Maybe I'm still not eating enough and I don't sleep . I'm only getting around 4/5 hours due to sweating , menopause and pred , and worrying . 

Thanks PRpro , much appreciated as always. xx

[PMRpro Ambassador in reply to Greensleeves]

"my limbs are slim" - thin limbs and an apple-shaped trunk are typical of Cushings and pred therapy - do discuss it with your GP.

[CloudGazer6]

I admire your willpower with carb-cutting, Greensleeves, and will hold on to the thought of walking even 1 mile in the future. Today was one of those days when even getting out of bed was hard, but I'll look forward to taking proper walks again at some point.