Since 2012 I have lost 8 stone through healthy eating and using a calorie counting app on my phone. Through lockdown I put on almost a stone which I think was caused by a combination of no work and also the fact that I was suffering dreadful pain and sleepless nights so the fatigue was making me sleep during the day.
Two weeks ago I was diagnosed with PMR and am taking a daily dose of 20mg of Pred, the only pain I get is where I am using muscles I haven't been able to use for months but I am still suffering fatigue which could be caused because I am doing more due to lack of pain. I was warned the meds could cause a bit of weight gain so I went back on my healthy eating plan and using my phone app which allocated me just over 1500 cals a day. I am drinking the eight units of water and am walking more with the dog so my exercise has increased as well.
Whilst I am sticking around about the same weight I would expect to be losing with the increase in exercise and the eating plan, but nothing is moving.
I know in the scheme of things the pain being gone is the most important thing but I was overweight for probably 35 years and my life started over once I lost the excess weight and a cheating husband until the pain started about 2 years ago, so yes I suppose it is vanity and being able to get clothes to fit me but its important to me.
My questions are, is there anything I can do to help minimise the weight gain, as I start reducing meds in a few weeks time will the weight come off, is it fluid retention. So many questions and I am sure you lovely people will have the answers for me.
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jaybee58
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With pmr you need to cut carbs in your diet rather than follow follow a low calorie one. It's the only way to keep off the pred weight. I ignores this advice in 2018 when diagnosed and put on two stone but have now lost a stone by cutting my carbs. It also varies how severely you need to cut carbs to actually lose weight rather than just maintain.. if you start cutting down on your carbs I am sure you will see a difference soon. YBB
I'm lost in admiration for somebody who was disciplined enough to lose 8 stone and keep most of it off. I'm terribly weak-willed where food is concerned and I'm afraid I'll never shed the 3 surplus stone that I'm carrying around. Regarding weight loss/maintenance while on pred, the advice is to watch the carbs rather than the calories. In particular cut out sugar and simple white carbs - white bread, rice, pasta etc plus potatoes.
As for feeling tired, the fact is that pred tackles the pain and stiffness but does nothing for the deathly fatigue. You just have to adapt to this and learn to pace yourself so that you use whatever energy you have in the most practical and rewarding ways possible, and don't worry too much about the things that you can't do.
Hi Jaybee and sorry you have had to join the PMR club but welcome to this very knowledgeable forum.
I was diagnosed type 2 diabetic about 4 months after my PMR diagnosis. I wanted to lose weight and get my type 2 into remission so went on the LCHF diet (low carb high fat)
I lost over 3 stone and feel better for it. I avoided the PMR moonface.
Cutting carbs is not for everyone but well worth a try
Your story is inspiring and self discipline awesome. Whatever it takes, you will achieve this. The answer does seem to lie in avoiding carbs ( I am not an example) as others testify. The lack of weight loss is the steroid working against you, I have changed shape completely and wardrobe. You, however, are the real thing. More power to you. Make lemonade. 🍋
Hello. Weight control is important for joints and reducing diabetes risk just for starters, but if it’s vanity that gives you the push so what. The fear of the dangers of weight gain kept me on the straight and narrow. I’ll echo what YB says in that it’s not calorie counting that’s the thing here, but low carb. The reason is that Pred causes the liver to keep making extra glucose from its stores. The resulting insulin spike to clear it, produces more fat. I had to cut out all pasta, rice, potato, maize, flours and eat lots of protein, veg, moderate fruit (esp berries) and fats (mostly plant based). After a while, anything remotely sweet with glucose or sucrose is pretty unappetising. Also, lowering salt helps prevent runaway fluid retention.
It worked with me starting on 60mg and really not being able to do much exercise other than a slow walk.
I lost 35lbs of PMR and pred-induced weight by switching to low carb. Like Snazzy I need to be really low but not everyone does. I lost the first pounds while on crutches for achilles problems so exercise wasn't an option.
It is much more difficult to lose weight on pred I found. I became a nutrition nerd when I was first diagnosed. I was also told that cutting out gluten and simple carbs would stop me getting a moon face, so I did that too.
Hi, I was diagnosed with PMR & GCA in Nov 2018. I started on 60mgs Prednisolone & am now on a fluctuating 4.5-4 mg dose. I am a lifelong weight watcher ...& belong to WW....& despite my best efforts, I gained just over a stone in the first year. Lockdown has done me a favour in that I’ve been able to focus on my diet & have rigidly stuck to my WW blue plan....which is low carb....and have VERY slowly lost 9lbs...so all going in the right direction! You obviously have the willpower from your earlier amazing weight loss, so stick with it! You can do it. It’s not quick & it’s not easy but it does go eventually!
I have been with ww for over a year, l lost 12lb initially, but then stopped, l was also on the blue plan, during lockdown l have put back on the 12lb again. Nobody at ww seems to know what’s going on, like the drs they think it is lack of mobility, or medication.
At least with ww l remained steady until lockdown.
My team leader at WW...who’s been doing it for 30 years....says a weight gain of 2 stone is common on long term steroids as she’s seen in other members in the past. So I feel fortunate to have only gained just over a stone! Since lockdown I’ve concentrated on going for walks locally as much as possible & that with the diet has obviously helped. It’s not been easy that’s for sure, but every half pound off feels like a major success!
Nutracheck. I have now set it to count my carbs as well as calories its giving me 168g per day, so I'm going with that and will slowly reduce. Like most people I guess I like carbs so will cut them out as much as I can and watch everything else I eat.
I too salute you as others have said you obviously have great self-discipline to have lost so much weight in the past - well done you!
I am not one to talk about losing weight whilst taking pred as I have gained enormous amounts (daren't get on the scales!). This ha upset me but I don't feel I ahve the self-discipline atm. I will try when I can by going low-carb. Good LUck!
My advice would be to seriously cut carbs. I too had lost weight prior to starting on Pred and didn't want to see all the good work gone to waste (waist?!). The Diabetes Weightloss Cookbook was a lifeline for me - theworks.co.uk/p/healthy-ea...
Ah now somebody mentioned diet and my ears pricked up as I've read everything I can about it for the last 3 years, trying to find a diet solution to cure PMR and get rid of the Pred weight gain. First of all congrats on the massive weight loss, that must have taken some determination. The trouble with cutting calories below your TDEE (Total Daily Energy Requirement) for a long time means your body goes into starvation mode, and to cut a long story short, you end up putting it all back on, and your body restricts energy rather than giving up fat. I have done this several times in my life until I discovered low-carb eating and have gradually lost weight over the last three years even when on steroids. Any keto website such as low-carbs.co.uk will give you a calculator to tell you how many calories you need to eat a day, based on age, weight, activity level etc, for me it is nearly 1900. It'd be worth you getting a second opinion from some different ones, though your 1800 seems reasonable at first glance. I keep carbs around 20-50g, protein around 120g and the rest virtually unlimited fats. It doesn't matter if you go over calories as long as it's on fats not sugar or carbs. At one point I was pre-diabetes level when on high Pred but it's back to normal now. Low carb is not just a diet for weight loss, but it it helpful for keeping blood sugar levels down and many people, self included, claim it reduces inflammation too. I hope things work out for you TC x
If that is not for you I joined a well known slimming organisation that isn't ww. It has worked well for me as I lost 4 stone eating rice and pasta. At the same time I was on 60mg for GCA.
Thanks for the info. I am managing to cut back on the carbs and have lost about 4lbs, but its hard. I've got another 10lbs or so to lose to get me back where I was before I started suffering pain so all the time I can cut the carbs I will but I hear what your saying and that could be an alternative if needs must.
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