I have had PMR for almost 2years now and am having great difficulty in reducing prednisolone from 3.5mg to 3mg and have just started DSNS.
My question is regarding weight gain. I have gained one and a half stones, all around stomach and hips. Does anyone have any experience of losing weight gained from steroids.
Hi, all I can say is that just after diagnosis I changed my diet to a low carb diet and actually lost weight. I was overweight and went from 12 stone plus to 8 and a half stone by cutting carbs
Hello and welcome. Have you tried a very low carb diet? Chiefly this means cutting out all, if possible, refined carbs like pasta, rice, bread, potato, maize etc. Fat is ok and ideally plant based with animal fat in moderation. Steroids do seem to demand more than just healthy eating because of the way it changes your blood sugar balance. Steroids do have the effect of concentrating what fat you do have round the middle too. What changes to diet have you tried?
After I finished steroids I lost all weight gained (and some)...some increased by steroids, and some through inactivity prior to diagnosis due to being in too much pain to exercise sufficiently.
You’ve cheered me up!
You are not reducing relentlessly to zero - you are reducing to the lowest effective dose that gives the same relief as the starting dose did. At a guess that is 3.5mg for you. It doesn't matter how slowly you reduce - you won't get past that point, either the dose of pred is enough to clear out all the inflammation or it isn't and even 1/2mg can make the difference.
Many of us on the forum have either avoided weight gain or lost pred weight we gained by cutting carbs drastically, especially processed products and added sugar. I lost 35 lbs while still at above 10mg - but I have to cut carbs a LOT.
This website is a good guide to the principles and what to avoid:
Thank you very much for your answer. I had thought I had to keep going until I was at zero so thanks for putting that into,perspective. Thank you also for the link to the diet site. I think I will find this particularly difficult, breakfast is usually egg on toast with crackers for lunch. I will explore further but have to be a bit careful as in the past I was diagnosed with. Crohn’s disease and had a large part of my bowel removed with the attendant problems that causes.
It is amazing what you can find as substitutes - post and ask for suggestions. One basic approach is stop thinking about what is usually regarded as a food for a specific meal. Think internationally - breakfasts differ from country to country.
I was terrified of pred-induced diabetes as my sugar level went quite high when first on pred. I eliminated all carbs from grains, etc. It was quite enlightening to discover how much wheat I'd been consuming. I'd already lost weight over the years probably from becoming vegetarian, so was at low end of optimum BMI, and had lost more weight with untreated PMR and eliminating most carbs (not vegetables and fruit though) has made me far too thin which persists despite reduced exercise and reintroducing carbs.
I switched from a big bowl of cereal for breakfast to an orange, 1/3 cup pumpkin seeds, two fired eggs (and tea of course) and have eaten this ever since, since 2015. I do eat crackers, whole grain organic, as a mid-morning snack but no longer have a sandwich for lunch. I hardly ever eat pasts, potatoes are a treat, and usually have a small helping of rice, at main meal, though lately I've been eating larger helping. I have also reintroduced a bedtime bowl of cereal in an effort to pack on a few pounds before I fade away completely.
I think the secret to weight control is a) cutting carbs and b) eating foods which require some work to get through. Like the breakfast pumpkin seeds keep me chewing for a while, and a substantial salad with a healthy oil and vinegar dressing fills me up at supper. A substantial breakfast is best for me and I do not get hungry again quickly. Other people who don't like to eat much early in the day may find this difficult and prefer to have a more sustaining lunch perhaps. It's important to get enough protein and not to eliminate healthy fats.
With regards to prednisolone, I am at exactly the same dose as you. I have tried on numerous occasions to reduce from 3.5 mg to 3 but all the pain comes back and I feel so tired. I am , sadly, coming to the conclusion, that 3.5 is the lowest that I will get to.
True for now, but give it a try every few months - when you are feeling well. Even another .5 mg may one day be possible. 
Oh Bagadesh, I should imagine you will be inundated with replies to this query! I only wish I had the discipline to cut carbs and lose some of the 15 kilos I have gained in the four years I have had PMR.
It is an uphill battle as the pred makes you so hungry. Plenty of people have done ti though.....
You' re doing very well to be on such a low dose of pred after such a short time. Be encouraged.
Yes, all my weight is on tummy and hips!!
I lost quite a bit of weight during the 4 months leading up to diagnosis when I was in pain and on anti inflammatories - these led to lack of appetite. My appetite increased when I went onto 15mg prednisolone but I tried to stick to lowish carbs although I still have bananas, potatoes, rice and pasta but less of it. I eat full fat food but no processed, or sugary foods and have cut out all salt apart from what's already in certain foods. I think I eat healthily and well balanced, and get a fair amount of exercise so I haven't put on weight. In fact I have to watch out that I don't lose any more. I'm on 7.5mg now but even so I have bags of energy.
I know exactly how you feel, i put on two stones. I did not have a clue how hungry they can make you feel, i just could not stop thinking about food!! anyway i was reducing my pred and felt fine, just started to be careful in what i was eating ,Lost 10lbs, i was so pleased then out of the blue had a really nasty flare. So my dose was upped to 7.For me this is the point when the hunger pangs kick in. So just waiting to taper down again. On the positive side at least i havent put whole 2 stone back on , So yes your not on your own and you can do it. Good luck Viv.
Just wanted to add: I have been far more disciplined during Lent - even gave up wine except prosecco on Sundays - and despite being on nearly 15mg pred I have lost over 3lbs in just under 6 weeks. It doesn't sound a lot but first time round I was pleased if I lost a pound a month. And it is obvious again that the fat has gone first from around my middle - the waist of my jeans is much looser than it was.
I started by looking more closely at calories on the basis of the Fast 800 approach but have found it goes a lot better when I concentrate on carbs. If I eat more carbs, even with low calories, I don't lose and have hunger pangs. Once I cut the carbs - not hungry at all.
Low carb really does reduce the pred hunger problem - because you have fewer blood sugar spikes which then swing back low and make you crave carbs.
I’ve been on pred since October 20 currently stuck on 3.5mg with a bit of discomfort/stiffness on a morning; started calorie counting at the end of October as needed to be proactive with weight- have lost 2 stone 9lb thus far......it’s definitely doable 🥳
I've been thinking on prednisolone for five years and put on an horrendous amount of weight. I have digestive problems which prevent me eating too much in the way of fruit, veggies and pulses and legumes. I started carb counting and lost 6lb in 4 weeks but then I plateaued 
I have just bought the Fast 5:2 and Fast 800 books and the Fast 800 recipe book. My intention is to do 2 fasting days a week and to eat normally for 5 days. I am hoping that this will help me lose the weight. My consultant says I shouldn't worry about the slow weight loss because it's likely to be the drugs stopping me but I want to do something to help as I don't feel comfortable and the weight just makes my joints worse.
Cooked the lemon and herb chicken thighs from the book last night with carrots and tenderstem broccoli which was delicious and filling
I have also started an exercise program too. I was an exercise teacher so I am trying out different things. I don't want to go into that at the moment but when I have put my plan together I will share it as it may help others. I have an electric bike too which I can ride for short periods. We live in a rural area but it's quite hilly so without the power I wouldn't get very far but just putting it on the lowest power to assist my pedalling has made such a difference. I can't walk far because of dodgy knees and back so the cycling is a bit of freedom for me.
I hope you find something to suit you but whatever you do listen to your body and do short frequent exercise sessions as this will help rather than overdoing it and maybe triggering a flare. xxx
Yes! I’m struggling also. My upper body has filled out in ways I’ve never seen. I’m very frustrated. I practically have to starve to lose a pound. Hang in there. Eat healthy, low carb. I’m currently on 6mg unable to go any lower.
Hello Bagadash,
Well, I've been on the Keto diet since November. Lost 7lbs very quickly. Then diagnosed with PMA in January this year, was put on 15mg on Pred, now down to 12.5 and still on the Keto diet.
The thing about the very popular Keto diet (used extensively in the US and all over the world, is that there is a good app. Keto, (it's purple in colour) which gives you the limit of carbs, fat and protein you should have. If you go over that (by recording what you eat) it soon tells you. You can eat all the things you probably like - cheese, fish, eggs, avocados, salads, double cream, vegetables, chicken, steak (the meats are all carb free), but sadly only berries for fruit. Do you know that one small tangerine contains 8 carbs?! My limit is 15 per day, now increased to 19, but most fruit is out, which I miss.
There are also masses of recipes, which are different and most interesting. You have to cook in olive or avocado oil and high fat is essential! Having spent years on low-fat diets, it is extraordinary but it does work, because the fat keeps you full and you never feel hungry.
You have to be disciplined but it is now a way of life and in spite of my steroids four months in, I am continuing to lose weight, now down by 13lbs - amazing for me.
There is also a chat line you can talk to the people who run Keto and they help you all the way. Do recommend it.
Also look at their Facebook page, it's a forum, like we have here. People from all over the world swap recipes, tell their stories, show pictures of themselves, quite inspiring really. Let me know if you try it. It helps gets that weight off!
I had gained lots also, though I blame my cravings for sweets and increase my consuption of wine from 1 glass to three. I do not know if the cravings came with the steroids or not! I am trying to control both the wine and sweets, so far they are winning!
I went into remission from PMR after 3 years and stopped taking Pred. Nov 2019. I had put on a stone whilst taking Pred. and lost all of it and a few extra pounds within 4 months of stopping. I'm now the same weight as I was in early 2020 so I haven't put it on again even though I'm not dieting, just eating sensibly. Hope that gives you some hope.
Check out ‘Ditch the Carbs’ website. Great info, easy & delicious recipes and ongoing support.
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