Hello,
So I am currently on steroids and have noticed I have been putting on weight but every time I try and exercise (at my own pace) my legs and body are so so sore.
It’s a horrible cycle as I don’t want to be putting on weight and would love to exercise but the pain is not worth it. It’s getting me down I don’t know what to do 
Any advice would be appreciated
I.x
First off don't over worry about it. Look at your diet & see if you can tweak it as bit....& work with your doctor to get off the steroids as quickly as possible......ask if you can change Dmards if your present meds aren't working for you. I find if you are firm & upfront about getting off steroids your rheumy is more likely to tweak your meds.
Gentle exercise & walking can work wonders.....don't expect to immediately see results, but do try to keep your joints moving.
Good luck,
I have my three meals a day and maybe some fruit in between I don’t really snack throughout.
I was coming off them slowly but my adrenal glands were not responding therefore they have had to increase the dose and I’ve been told I will be on the steriods for the foreseeable future
I’m 24 and I really don’t want to be on steroids at this age but there’s nothing I can do.
I will take your advice and go for a walk most days.
Thank you for taking your time to reply 
I.x
I have gone from a size 8 to size 14 in 3 years since being on steroids and I struggle to excersise with my pain.
Recently I was advised by my rheumatologist to cut out all sugar as the steroids turns it to fat. Sugars are hidden. So things like potatoes and bananas and grapes have so much sugar. Two slices of white processed bread contains as much sugar as a mars bar.
You have the right attitude to nip it in the bud. Maybe make an appointment with your GP nurse and discuss the problem with them. I have had loads of help from my GP nurse, very supportive and informative.
Good luck!
Oh I didn’t realise that steroids turn sugar to fat, that’s interesting to know. I will definitely keep an eye on what I eat.
I will contact my gp surgery and seek some advice. I really appreciate your help. Thank you
I.x
Hi imzi ,
I would echo what others have suggested and discuss this with your medical team. Perhaps they can refer you to a physiotherapist and dietician. They may also be able to adjust your treatment carefully over time.
We have a blog article about exercising with lupus which has lots of information and advice that you may find helpful - lupusuk.org.uk/lupus-and-ex...
Thank you for the link I shall have a look at and will seek some advice from my gp too.
It is possible to manage weight gain while on steroids by cutting carbs drastically - pred changes how you metabolise sugar and simple carbs and deposits it as fat in the usual places. I lost 35lbs while still on between 10 and 15mg/day and others on my home forum have done too.
Carbs hide in all sorts of places - fruit is good for you but has lots of carbs so not ideal for losing weight. Veggies, not root veggies though, are far lower in carbohydrate.
Google low carb and you'll find lots of info and then take it to discuss with your doctor. Unfortunately the NHS is still fixated on its "healthy diet" approach which has far too much carbohydrate in it for our purposes but some dieticians have seent the newer work.
I second this. I've been on steroids for 6 months now and have lost weight by being low carb. Well I'm actually on the Paleo/AIP diet still but that's low carb and no processed sugar anyway - though I do eat root vegetables because hey, it's winter!. I also eat fruit.
Just bear in mind that you have to up the protein and fat significantly to compensate, starting with breakfast. And it's tough for the first three to four weeks.
After six months on this I honestly don't miss sugar, grains or other processed carbs at all, even though I have to cook it for my daughter.
Could you please give me some ideas on what I should be eating? I would really appreciate it.
It’s inspiring to know that is it possible to loose weight whilst on steroids!
I have a diary allergy so don’t eat cakes and chocolate etc
Thank you again for replying
Hmm can't really advise you because I'm not a dietician, and everyone (particularly Lupies) reacts differently to things.
All I can say is that Paleo works for me - it doesn't 'cure' the Lupus you understand (some on the web will say it can push autoimmune diseases into remission - I just won't go there) , but it doesn't aggravate my system, has enabled me to lose weight, and best of all, has some great recipes. I really do get excited about pan fried brussel sprouts with bacon bits these days :). And don't get me started on the roasted in extra virgin coconut oil parsnips PMRpro ! I practically dream about them.
But I'd suggest doing your own research. I started by going slow and above all, learning to cook differently. Any low carb/no sugar diet will mean you can control the pred cravings while never being hungry.
I was amused to note at my last appointment that the Lupus nurse was fully up to speed with this. My consultant was still banging on about being low fat. Honestly!
Hi there, mainly reiterating what others have said: many people struggle to reduce steroids including myself- only achieved it by having other dmards- in my case hydroxychloroquine sulfate and then mycophenolate mofetil. These drugs were gradually increased until symptoms were better controlled , then the steroids could be reduced, then the other drugs were gradually reduced, so it might be worth discussing other strategies with your doctors. Also re weight loss: I recommend using the app 'my fitness pal' - u can use it to track your food intake- u enter a food diary & it tells u the calorie content but more importantly the nutrients so u can see where u r going wrong- if u have a smart phone u can scan the bar code on packaged food & it will automatically enter the items details or u enter the info yourself e.g. 100ml semi milk & it logs all the info. it is NOT A DIET just a tool to help you but is brilliant : my son suggested it as he used it to put on weight!! Lol! As he was trying to build up muscle. But as others have said carbs were my problem- I was on a healthy diet eating whole grain cereal & bread & low fat stuff no cakes snacks biscuits & my weight wasn't shifting! I didn't change my diet I just changed the proportions: small portion of pasta & sauce & massive portion of veg. So I never feel hungry as the veg fills you up but without the calories. It also helps you track the sugar & salt etc . It may seem a pain to log everything u eat at first but I found after 2 weeks I'd learned what to increase & whT to decrease so didn't need to use it after that. I don't believe in 'diets' as such, as people often regress especially if it is a radical one. It just helps u eat a balanced diet with the correct calorie intake for your lifestyle. I lost 13 kgs in about 6 mths without feeling hungry or doing any exercise !! 😀
Have you tried swimming - nothing too aggressive to begin with - be kind to yourself.
That's what my Consultant recommended in the early days. It also helped lift my mood.
Also note some of the weight gain is down to fluid retention.
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