Have other members of thr pred 'club had trouble losing weight

[thepainofit]

I have been taking pred now for pmr for ten years and have reached a low dose of 5mg only once for about a year then the inflammation came back. I am now at 10mg and can't seem to get below this without a flare and I have put on 3 st in weight over the pandemic my bloods now show that I am pre diabetic. Has anyone lost weight taking this dose? I am following diet from gp but it just won't shift

[Greensleeves]

I stop carbs and sugar . It isn’t easy especially with this miserable weather. I’ve been eating mashed potatoes this week and have gained weight again already.

The 800 diet is great though.

The Doctor who devised it was pre diabetic or diabetic.

There are some lovely recipes.

I’m back at 8.5 mg I can’t find a comfortable dose since Christmas, I’d been on 3mg . Wishing you the very best x

[Koalajane]

I lost weight when on 15mg, in fact I lost over 3 stone and now on 4,5mg and trying my best to stop my weight from continuing to fall. I went on the low carb,high fat diet as I was diagnosed type 2 about 5 months after my PMR diagnosis. My diabetes went into remission 6 months after diagnosis. Apart from the diet I also walk over 12!000 steps a day

[Mary63]

I started on 20mg 5 years ago, and began low carb high fat immediately. I lost a stone in first 6 months. Then went onto ‘normal’ healthy eating and put it all back on. In the last year I have lost a stone and a half on low carb, moderate fat, and intend now to stay on it long term. It seems to be the only method that works for me when on steroids. Not really hungry either unlike on low calorie diets. Look at diet doctor.com for some guidance.

[SnazzyD]

Severely cut out carbs because just being on a normal healthy eating diet isn’t enough to counter the spikes in blood sugar caused by the Pred. Many on this forum, including me have successfully controlled weight and blood sugar this way. Some of us have to cut out nearly all carbs, such as me, which meant no pasta, rice, potato, flours, sugar, maize etc. Oils, preferably plant oils are ok and help to make you feel sated. Even starting on 60mg it was effective. I ate well as long as it was protein, oils, veg/salad and some fruit, especially berries. My desert was either berries with plain coconut yoghurt (I can’t do dairy) or two squares of 85% chocolate. I also had 2 small glasses of wine per week.

I maintained this all the way to zero Pred, though I had the odd chip or packet of crisps per week when I was under 3mg. I still, even on no Pred, have to watch it now, though I really don’t miss rice or pasta now.

[PMRpro Ambassador]

Unless the diet from the GP is low carb it is unlikely to work when you are on pred. Many of us on the forum have maintained weight (i.e. not put it on in the first place) or have lost weight while on pred by cutting carbs, Originally I lost 35lbs over a couple of years by cutting carbs while at above 10mg and recently I have lost about 5lb of the weight I put on over lockdown while on 15mg. It is slow and I have always struggled to lose weight - but it can be done.

MrsNails lost a couple of stone last year on a diet recommended for pre-diabetics:

healthunlocked.com/pmrgcauk...

and she, like several others have reversed the Hba1c increases from pre-diabetic to normal.

Someone has already mentioned the dietdoctor.com/low-carb/foods website - you don't need to join anything and pay unless you want to - just learn what foods to avoid and pay attention to cutting processed carbs and added sugar. And portion size as well.

A couple of people have used the Michael Mosely Fast800 diet as well.

[MrsNails]

This is My Story of My Weight Loss on 12.5mg Prednisolone

healthunlocked.com/pmrgcauk...

[123-go in reply to MrsNails]

Good work, MrsNails. You look fab! An inspiration.

[SnazzyD]

Yes, I expected to be back to normal diet off Pred but 8 months on it appears not. No idea what my insulin levels are or anything but I can’t go back to normal healthy meals without putting on weight. Something has changed during the Pred journey over 3.5 years. I certainly find that a 1000 calories of carbs has a much bigger effect than a 1000 calories of non carbs.

[Pollyanna16]

You sound to be doing all the right things but perhaps it’s what you eat that’s the problem. I discovered eating lots more green veg, less carbs, lean protein & cutting out the cake made a tremendous difference. I do have full fat Greek yoghurt with breakfast & any cooked fruit. Exercise definitely helps me too as it helps the mindset. Don’t forget you are increasing your muscle which adds weight. Perhaps you are losing it slowly which is not a bad thing at all. If you haven’t already it’s worth looking at Michael Moseley’s website & books. Take care

[Rose54]

Hi I suggest

Googling NHS Diabetic Management programme

I lost two stone 18 mouths ago while on 15mg of Preds

Kept it off until a flare in Feb this year and back up to 15 Preds from 7

Put on 6lb .

Will be 6 years with PMR this year

Most my family are Diabetic so aware I need to be really careful

I joined on line group to mange Pre Diabetes self referred .

Its really helpful group sessions with Diabetics UK every 3 weeks and I think it over a year or even longer .

Each sessions last a hour

My Son has joined in and he has lost 1 st in 12 weeks

[Daffodilia]

I have gained 1.5 stone since Oct 18 - now on 6 mg - try to reduce fat cos of gallstones but can’t face low carb diet - trying not to gain anymore with more exercise now COVID restrictions easing

[Janet57]

It’s not easy is it. I did lose 3.5 stone through Weight Watchers - but lowered my carbs. I didn’t want to cut out carbs altogether. When I was able to do a bit more exercise (walking and aqua) it helped me lose it. I’ve put a bit back on but working to get it back off. I liked the encouragement of the WW group. I do know that cutting carbs seems to be the most effective way to lose or maintain weight loss whilst on Pred. Good luck and let us know how you get on. 😊

[agingfeminist]

No carbs, no sugar. No fried food. Good luck!

[autumnlass in reply to agingfeminist]

Very true! Not much joy is it though! 🥲

[PMRpro Ambassador in reply to autumnlass]

I never think about what I can't, just what I can eat - and there are very many, very joyful meals put on my table

[autumnlass in reply to autumnlass]

I’m a carboholic! .... so I am very careful since PMR diagnosis. Have lost over a stone since July 2020 ... I am forever trying, but it’s still a struggle! 🥲

[PMRpro Ambassador in reply to agingfeminist]

Nothing wrong with things that are fried in moderation - not the deep fried in batter variety though! Especially deep fried Mars bars (and yes, they really do exist ...)

[Bobbury]

Like you I've been on pred for over 10 years. I was on 7mg but over the last months I've had to increase to 9mg now down to 8mg. Weight for me has always been a problem but with pred but over this whole pandemic I went from 13.10 to over 15 stone!! I found it so difficult to lose weight. A family friend introduce me to MyFitnessPal. It's about calorie counting and exercise. It's an easy app, I use it everyday and have done for the past 12 months. I'm now down to 13.9, my goal is 13.7. Just enter you weight height and age. A daily calorie intake is calculated for you. It also gives you exercise routines, menu's and other related information.You don't have to do it all it's a guide, suggestion, it worked for me!

[Pollyanna16 in reply to Bobbury]

That’s brilliant, however much help you get from the App you still have to be organised with the right food & motivated!

[S4ndy]

I have put on lots of weight over the 5 years I have been on Pred and through lockdown. I have been doing the Fast 5:2 diet where you restrict your calories on two days a week. I have lost just over a stone in about 6 weeks. I am pleased with that as I don't mind how slow, just that it goes off and stays off. My Rheumatologist did warn me not to set unrealistic weight loss goals but to take it slow.

I find cutting carbs very difficult but found I can manage it two days a week. I have IBS so have to watch out for my trigger foods which unfortunately are in the fruit and veg groups. I also cannot eat anything wholegrain either. Porridge I can manage so this is useful on fast days.

I think the best for me is exercise to control my weight but unfortunately my body doesn't agree and so have to be very careful that I keep it to a level that doesn't make me flare. Cycling is my go too when I well enough to do it.

Having done the 5:2 for a few weeks I am getting used to it and find it easy to stick to. I am hoping I can continue this long term as I have failed with every other "diet".

[Pixix in reply to S4ndy]

I’m on 5:2 as well and lost three quarters of a stone in six weeks. I put on two stone due to Pred in addition to the two stone I didn’t shed during my last doses of Pred about eight years ago! I lost a stone on the keto diet on 15mg of Pred but it went back in so quickly after I stopped the diet! I reversed pre diabetes using keto though!

[Cofab2]

Hi, and yes to not being able to lose. I have been on pred since 2015. Ups and downs due also getting GCA. I have been down to 3 1/2 for a short time, flare, back up, but have now been on 5 and my rheumy says it will be forever. She also said some persons never lose until completely off. My diet is pretty balanced, so I am going to try to be content. This immune disorder changed my healthy, active life. But, my sanity was saved by finding this forum, and let me know I wasn’t alone on this unwanted journey! But....I know it could be a lot worse! JUDY in USA

[MaritimeMags]

Dear PainofitI found recently I had put on nearly 2 Stone since last August. Sounds a bit stupid but I never really noticed during Lockdown. My clothes continued to fit ok. It came as quite a shock.

So now I am watching food intake closely, increasing exercise - and weighing myself weekly.

I did a big clearing job today and, afterwards, felt much more tired than usual - like a weakness. I realised this was probably the PMR and steroids etc.

I have found reading everyone’s comments on this site very informative and reassuring.

[cycli]

Hi everyone. Maybe this is something I can really help with as a serious cyclist. First step in losing any weight is to reprogramme your digestion and simplest way is simply to drink water. Nothing else . Obviously keep eating. For 3 weeks first thing when you wake up drink 750ml water. Keep it by the bed. Mid morning say 10/11am drink another 750ml and mid afternoon same again. Probably one of the hardest things to do. Guarantee you'll start losing some weight without any single change in diet. Don't do more water than that though. You can overdo it.Now as to carbs you need to eat the right carbs. Bread, potatoes, pasta basically wheat are bad. No biscuits, chocolate things, basically all stickies, cookies crisps, chips. Sweet potatoes, avacado, rice and so on are good. So mash use sweet and parsnips. Makes a great topping for shepherds pie. Buy a fresh coconut and break up the flesh into chunks and put in fridge. When hungry for a snack just take a chunk of coconut and chew. soon works and suppresses hunger. Breakfast for me is greek yoghurt, blueberries, sunflower seeds and a smattering of sultanas. A banana and clementine. sometimes porridge. Lunch is 2 eggs, some grated cheese, some chopped fresh tomatoes. banana and clementine. Evening meal is lasagne, risotto, a joint ,fish, chicken, meat or fish pasta. Whatever I decide to cook. Wife does puddings and that's where I sometimes overdo sugar. That's the next thing to cut down on. No fizzy, pop, or usual fruit juices. They all have far too much excess sugar. Too much sugar swilling around in the blood stream is bad. Excess sugar binds to free protein molecules in blood and prevents them reaching the muscle, so however much protein you consume to build muscle it doesn't get there. Natural sugars in fruit is good but not dried fruit as too concentrated. Nuts like brazil, cashew almonds etc. good. Oh and a quick one on pastas and bread. It turns out if you freeze bread and then thaw and toast or just use as is it has half the calorific value. Same with pasta. Cook it, freeze and then thaw and reheat, half the calorific value. I like pasta so this helps me not give it up. Alcohol is a big weight gainer and puts a lot of sugar in the system. I like wine and the odd whisky so I spoil myself but don't overdo it. Fat on meat not bad for you in moderation, same with butter, better than the alternatives and I still use full cream milk and double cream and creme fraiche in cooking. Olive oil essential. Hope that helps folks.

[PMRpro Ambassador in reply to cycli]

Sorry - please remember that that is what works for you and when healthy. We are not healthy and not taking the sort of level of exercise you have been previously.

One of the biggest problems when on pred is carbs in the diet - pred changes your metabolism and also causes the liver to release random spikes of blood sugar from the body stores in the muscles and liver. That results in secretion of insulin which encourages any excess glucose as fat stores in particular places - belly, back of neck and around the face causing moonface. You have to manage the contribtion to BS that you can, and that means dietary carbs, It doesn't matter whether the carbs are "healthy" - fruit and lower GI things like sweet potatoes are just as bad in this context as plain spuds and pasta or rice.

When on pred the best approach is to cut carbs drastically - of all sorts but especially processed carbs and fruit and added sugar. That means cutting things like bananas and apples which contain a lot of carbs - as do sweet potatoes and parsnips. Cutting the processed carbs also cuts the salt in your diet - also important for fluid retention which can be a problem when on pred.

This website is very good for identfying the foods with carbs that need to be avoided:

dietdoctor.com/low-carb/foods

[cycli in reply to PMRpro]

Thank you PMRpro. Once again I have to adjust even this which I thought I had sorted. When one says life changing it really is just that. Sorry if my blog wasn't helpful. So much to take on board and learn.

[PMRpro Ambassador in reply to cycli]

Oh yes - life-changing doesn't come near sometimes.

[cycli in reply to PMRpro]

interesting read. Thanks

[cycli]

It takes something like this disease to make you realise how much we take for granted. Our bodies mostly get on with the job of self correction and functioning without a thought from us. This disease forces you to face and try to understand how the body functions because it really undoes all those natural controls . Now we are on drugs to suppress the disease we have to help ourselves return to "normal" by degrees and then try to recover some of what we had before the devastation. Advice from well informed fellow sufferers has helped anchor me for this. I don't intend to let it win, but something that "has you by the short and curlies" is not to be messed with.

[MrsNails in reply to cycli]

We take the Prednisolone to try to tame the inflammation that causes the set of symptoms, we called PMR - they only deal with the inflammation but do nothing for the disease itself only the symptoms. That’s why we try to explain it’s still chugging along in the background. So if you over do it because you feel so much better it tends to show it’s self again pretty quickly! It’s a balancing game, hopefully if you get the inflammation under control & try to reduce steadily until you reach the dose that will hold your symptoms at bay. PMR is a self limiting illness it does not conform to a Set of Symptoms for a Specific Time. You however have one advantage, you are male & men appear to taper well, thus making a quicker recovery.

Fingers Crossed.

MrsN

[cycli in reply to MrsNails]

I've had this info. on tapering from others. Is there some gender issue which may be involved like hormones? I can't believe it is attitude because there are just as many determined females out there as males. It maybe a mindset and I never underestimate the power of positive thinking. Often the sheer will to do something triggers a response and that thing comes to pass. Mind over matter so to speak. These drugs however seem to have overridden our body's natural responses and tapering allows us to regain these. It's a conundrum.

[PMRpro Ambassador in reply to cycli]

Women are more likely to suffer from almost any autoimmune disorder then men. They don't know why but they do think it MIGHT be female hormones. Or it MIGHT be something to do with muscles - men tend to have more than most women but I don't think I've noticed that athletic women have an easier time. But it is a general thing - some men have it a long time too.

[LRevell]

I’ve been on the AIP diet and have lost 25 lbs. It’s basically fresh fruits, veggies and meat. No sugar or processed foods. It’s an anti inflammatory diet as well.