I have Polymyaligia Rheumatica for about 18 months, and have put on nearly two stone of weight. I probably eat more than I should, but not huge amounts, My biggest problem is that I eat lots of grapes. I started on 15mg of steroids, and am now down to 6mg. I have not had a flare up, and apart from have aching arms at times, and feeling exhausted, I am not too bad. I feel absolutely huge, and few clothes fit me now.
Just wondered if anyone felt like this.
Regards,
Grace
Hi grace, unlike you I was already 2 stone overweight when I got PMR and over the past 18 months I've not put on any additional weight! and I eat loads. I am however on a diet that is a sort of low carb, high anti inflammatory 2:5 diet. I have lost about 4 lbs, not much I know but I'm slowly getting there and as I said I'm only on a sort of diet! I am happy that you are recovering well, keep up the good work! Christina
I really feel for you . . . . some thirty months after being diagnosed I'm a nice unhealthy two stone up. To really loose weight I would have to be very, very stringent over food intake. I did loose half a stone but put it back almost over night.
the trouble is that food is 'nice' and even the smallest intake is multiplied by Prednisolone in some mystical way which confounds my reasoning. Excercuse helps but that is a challenge as any precious energy I have I want to use on more exciting things than sitting on the excercise bike.
I'm looking forward to reading all the answers or is the new diet pill going to be the means . . .
Hi Grace - long time no hear!
I actually put on a lot of weight just because of PMR and not being able to exercise as I had before - not pred, I wasn't on pred for 5 years. When I started on pred I didn't put on significantly more weight but it redistributed to face, back of neck and midriff. Then I was switched to Medrol - and the weight went on big time! Nearly 3 years ago I was admitted to hospital and weighed about 88kg (just under 14st). I'm 5'1" in my socks. I was a total blob and I refused to even look in a mirror.
A few months later I was switched to another form of prednisone and have steadily lost weight since. At first it was barely noticeable but I changed my eating habits - I didn't eat much carbohydrate anyway but I cut it even further. I eat no processed carbs at all now. I eat salads and non-root veg most of the time. About once every 2 or 3 weeks I eat a couple of small pieces of roast potato with roast chicken (the only roast we eat). Portions of meat/fish are 4-5oz at most. I dress salads with olive oil and vinegar and dried herbs. I occasionally eat peas and carrots, never more than about 1oz/30g bread and that only maybe twice a week. Cake, desserts, pizza are very occasional treats - I don't refuse to eat them but they have to be special. I haven't given up wine.
I also used the 5:2 diet to kick start things - what it did more than anything was retrain my appetite and I can honestly say I am not hungry and if I do feel peckish I get something to drink first and that usually works.
It may sound boring and restricted - but I don't find it so. I find it is easy to have a wide choice of meals and it is food I enjoy. The real plus side is I have lost about 19kg/42lbs over a period of just 2 1\2 years, about 2lbs a month on a good month and a good 5 inches from my waist.
I do find that in a month where I have eaten more carb than usual - visitors or holiday where it is tempting to eat pizza, pasta or polenta (I live in Italy!) I don't lose weight. I don't gain either though. As soon as I go back to my normal diet I lose again.
David mentions "even the smallest intake is multiplied by Prednisolone in some mystical way". Pred changes the way our bodies process carbs, making weight gain and a predeliction to developing pre-diabetes common. If you remove the offending article - carbs - you help your body not fall prey to these problems.
Fruit is healthy - but it is also a source of sugars, carbohydrate and the carb count mounts up rapidly. Grapes are delicious - but very more-ish and very carby. There are other fruits that are less carby such as berries.
There is loads of info on the internet these days about cutting carbs, I particularly like a blog called the Diabetic Mediterranean diet where a doctor who is a diabetic explains the theories and practise of low carb eating. This isn't NO carb, it is LOW carb and so very healthy and is a diet that has been approved by the American Diabetic Association for management of diabetes. I find I have learned to get very good value out of carbs - a normal sized piece of cake from our baker is now 3 portions for me! I eat 1 bit and keep one for tomorrow and freeze the other - and it is enough. If you don't buy something you don't get tempted to binge.
Weight is a very strange thing with PMR. Most people put on quite a lot of weight (as you have!) but some hardly change. I only put on 4 kgs (about 8/9 pounds), but in the last 1 1/2 years I have taken off 10 kgs (about 1 1/2 stone). I am 5ft6ins tall, so nothing changed a lot. I got a puffier face, and my waist was a bit thicker,
that's about all. I never had to change my dress size or anything. I suppose I was lucky. Dieting must be awful. Hope you sort youself out soon.
Greetings from Constance
I know of a couple of people who LOST weight once on pred! Lucky them - but one was causing her doctors some concern at the amount she lost!
Hi, I have not had an issue of weight gain, except in Very beginning (but know that was more from Antidepressant at time....which caused fluid retenion)...but I do know that steroids (especilly Prednisone.)..or equivalent, does also cause Bloating. Many Asthma patients, taking Prednisone following a major attack, develope what is referred to as "a Moon Face", as a side affect. Could this be the case for you?
I think the above information is Very Good, and so accurate, that I don't think anyone should ignore it, for all health reasons, especially anyone who is concerned re weight gain, or pre-diabetes.....Congratulations.
Hi, I have PMR just diagnosed November 2014 and started on 20mg of pred. I know that I have gone up a size in clothes and face is rounder and have quite a number of double chins. I rejoined my slimming club and overall I lost 1lb in 7 weeks and it really messed with my head. I have been with the slimming club off and on over 5 years, so I know the plan inside out.
I even stopped carbs for about 3 weeks and still didn't lose an ounce. Good luck. Pat
Hallo Eileen. Nothing to do with weight, but...! Sorry to be a " Dickkopf" but I have a query about bloods again. I know you have explained it all before, but............! Saw my Dr a couple of days ago and he said CPR was rising (albeit slowly. 9, 12, 18, 22) over the last few months. I know this is supposed to be within the "normal" range, however, how would you react with this info? He also said the platelet count was too high. Do you think that is because of my recent flu problems?
Thanks for any advice. Constance
Hi Eileen, I am thinking of trying the 5:2 diet but with this brain fog I cannot work it out (the actual fasting day). I want to do a Monday and a Thursday. So if I have my last meal on Sunday at 7pm does that mean I don't eat until 7pm Monday (I would need to have something in the morning, because I take my meds then). Why is is that I cannot understand the most basic and simplest concept. I find this most frustrating and it sometimes brings me near to tears because I cannot grasp something. I have a 3rd level education so I know I am not stupid. I will put it all down to ME, PMR and preds. That sounds much better. Thanks in advance. Pat
Those carbs are 'bad boys' . . . the trouble is that they lurking everywhere! Just as I talk myself into cutting the carbs I find them waiting in vegetables and fruit it's not all cake and pasta.
Many years ago I went in the first Aitkins diet and fell in love with it and lost loads of weight (was still well covered) but bad breath was a real problem that never left and I changed my diet . . . tis true the weight took a long time to come back but so did my heavy carb eating. I tried it again recently but firstly the weight loss was not in there and so neither was the accompanying encouragement.
I think Eileen has it right 4/5 oz protein with 'med' style vegetables and salad and no bread. Breakfast is a big problem, sitting by the sea in Crete fruit for breakfast is great but her in England you pay the earth and wait patiently for it to ripen only to find it 'did' it overnight and is now 'over the top'.
Whats this got to do with Polymyalgia rheumatica [PMR]? Everything as looks like I'm in for the very long haul, so Prednisolone is going to be around for some time yet and in all honesty I dare not add anymore weight on the contrary I MUST loose some, really.
So I'm going for another go. Goodbye bread and cake and cereal . . . . . . . get that bid under control then try the next step.
Thsnks for the encouragement Eileen . . . you are f
good for me.
. . . Want to edit that as there is glitch in the last paragraph.
Thanks for the encouragement Eileen . . . . you are good for me.
Thats better😊
Hmm - when was the flu and did you have chest problems with it? CRP will rise with respiratory infections and prednisolone increases the platelet count.
If the CRP continues to rise he needs to think about why - even if it is still in normal range.
Yes, fruit in the UK is expensive - but it also has lots of carbs and doesn't fit in a low carb diet for that reason. Lots of leafy veg - and grow some lettuces of your own ;-)
Perfect low carb breakfast/lunch? Ham and eggs, cheese omelette, scrambled eggs (with very little milk), as a Scot: smoked haddock and poached egg, kippers, bacon, sausages made without rusk and stuff (gluten-free ones are pretty good or bratwurst).
The possibilites are there, you just have to forget a lot of the rubbish from the manufacturer-backed nutritionists who wanted you to go low fat and make them lots of money as they added HFCS to anything you could think of to make it low fat but tasty (bleugh) and long-lived. You make a cake and it lasts a few days, just look at the best before dates on packaged food. It's horrifying.
"Smoked haddock and poached egg". Yummy! Have you ever come across smoked haddock in Germany?
No - but there are companies in Arbroath that mail smokies all over the world.
Thanks. Have looked it up. Will definitely order!
Hi Christina, I don't know if I have asked you this or not. My brain fog has taken over once again. I want to do the 5:2 diet and start on Monday as tomorrow is Mothers Day and I will be having some chocolate. So my fasting days or going to be Monday and Thursday. So, if I have my last meal on Sunday night at 7pm does that mean I don't eat until 7pm Monday (I take my medication in the morning) so have you any idea how I get around that. I would be grate for someone, anyone to explain this. I am not a stupid person but sometimes the most simplest things I cannot get the grasp of. I have a university degree so I know it must be the brain fog. Thanks in advance. Pat
No - in the 5:2 diet you never "fast" in the sense of not eating anything. The "Fast" days are the 2 days a week where you only eat 500 calories (if you are a woman, 600 for a man). The other 5 days you eat normally (but thoughtfully, you don't binge because they aren't "fast days" and you can eat what you like.
So Sunday night you will have dinner as normal, Tuesday morning you will have breakfast as normal. On Monday you will choose meals where the calorie count adds up to 500 altogether. It is much better to think about this in advance so you can decide what your meals will be and work out what to have. There are loads of recipes on the internet and suggestions for low calorie meals - but you need to think in advance because you need to buy the right sort of food.
A breakfast could be a boiled egg (70 calories) and tea/coffee with milk (maybe 70 calories in the milk) Total 140cals
Lunch: a big bowl of salad might be 100 calories if it is mostly leaves with dressing
That leaves you about 250 cals for your evening meal - 40z of white fish is about 200 which leaves you 50 for a side salad or veggies
It is all about what you choose to eat - white fish is fewer calories than oily fish for the same weight. Chicken breast is fewer calories than red or fatty meat and obviously 4oz (whichis a real portion) has few calories than a restaurant 8oz steak. Some veggies have fewer calories than others, leaf salads have very few calories in a big dish but look loads. Mushrooms done under the grill have almost no calories, saute them in butter and it is a very different matter! On "fast" day you would grill your mushrooms, on the other "normal" days you can have them done with butter as long as you don't go mad.
And by far the best thing to drink is plain water or herbal or fruit tea (with no sugar of course).
There are lots of recipe books with meal suggestions that make the "fast" days easier - foods and quantities that fit well with 500 calories. Choose wisely and you won't feel hungry at all. And do drink plenty.