I have gained 20 lbs since being on Prednisone. I was watching what I ate closely at first trying to keep it from happening. Then it just seemed to come on me. . Since at the time I had no real idea about the duration of PMR and being on steroids I thought in a few months when it's over and I'm off Pred I'll get the weight back off. Well now that I know that I could be on these steroids for quite some time I'm wondering if it's actually possible to get the weight off even though I'm still on the Pred. Has anyone had success at this. I'm at 20 mg currently and know it will be a long process to reduce since I've already attempted 3 x and had to go back up even higher than my initial dose. I've read Pred actually changes your metabolism. The PMR battle can be discouraging and then to gain the weight too makes it more so. Any comments and thoughts are appreciated from my fellow PMR cohorts!!!
Seriously cutting the carbs seems to be the only way. PMRPro has done it successfully. I'm still battling with it I've gained fair bit more than you but maybe over a longer period. Started steroids in July 2014.
i have managed to stop the gaining so far far on this attempt to really cut the carbs! I know it works cos I lost nearly a stone first time, but the carbs crept up again!
Managed to control my weight with a very strict diet. There are a number of auto-inflammatory diets on the web. I have gone gluten free in an attempt to cut carbs and other inflammatory foods. Secondarily, no sugar which means I've had to say goodbye to a lot of things I love. Basically, I've changed everything. Has taken a lot of discipline but the alternative is worse.
As Sheila has said, I put on a lot of weight with pred and have lost most of it by drastically cutting carbs at the same time as I was switched to another form of steroid. I had put on some weight with PMR and no pred since I couldn't exercise as usual, that redistributed with pred though I didn't put on much more and then I was switched to methyl prednisolone. Cue massive weight gain and all things Cushingoid within a few months!
I tried the usual diet stuff under the local hospital dietician but really struggled so started to experiment a bit. I tried the 5:2 fast diet and that certainly helped reeducate my palate with regard to portion sizes and within a few weeks I was far less hungry even on the other non-fast days. I added in drastic carb cutting and the weight just went - very slowly, but it went steadily. I noticed I lost weight when I didn't eat much carb, any time we had visitors or I did have carbs (because I love polenta so I eat it occasionally or we went for a pizza) I didn't lose as much or didn't lose at all. The carbs definitely did make a difference. At first I couldn't walk much, I was on crutches with an achilles problem, but the weight went slowly and as it went I was able to start walking more too. Every little helps. I managed to lose 18kg originally but 2kg went back on for no apparent reason but I have stayed stable. I'd like to lose more but am a proper shape - no midriff pred tum, no hump, no fat face (just wrinkles, you can't have it all ways!).
I like a blog called Diabetic Mediterranean Diet by Dr Steve Parker - got lots of good info and ideas there. The new improved adapted Atkins diet is good for recipes too - that is the basic idea, and it allows some carbs. I normally eat no processed carbs at all and what carbs I do eat are veggies and salads. I don't however refuse to eat carbs altogether - I eat half a roll occasionally, I have an icecream if I want one or a slice of cake, though like the 1/2 roll, a slice of cake from a cafe always means at least half to be taken home for another day! I simply don't want as much. I never feel hungry - except after I've eaten more carbs than usual. Blood sugar rises, body makes insulin, blood sugar falls and body thinks it is being starved so tells you it wants more!
There are others who have also lost weight in the same way, some have avoided putting on weight in the first place. One lady did lose a decent amount of weight with WW but with the diet clubs you must be careful to find a class leader who really does understand how pred affects the metabolism, many don't. They tend to set goals that you can't fulfil and that leads to getting down about it.
PS - I don't think gluten-free is necessary other than you achieve low carb by removing grains from your diet. I don't eat wheat as I have an allergy to something in the structure of the grain - I can eat rye, kamut and spelt, and I do, just not much. Gluten-free products are very calorie and carb dense so avoid them - they have even more junk in them than any other processed carbs,
But once you read your labels you will find LOTS of hidden carbs, especially wheat and sugar, in everything! I eat freshly prepared veg and salad, fish, meat and cheese. I avoid root vegetables as they tend to have a lot of carbs - it doesn't matter what the source is, starch turns to sugar in the body and ends up as fat on your hips, tum and bum! And pred encourages it! I don't refuse to eat them - I just eat very small amounts.
Contrary to urban myth we do NOT need carbs to survive - the body is very good at living without carb.
Went Gluten free as part of a try-anything strategy. None of th docs seem to know anything about PMR other than "no known cause; no known cure." And for all the talk about prednisone, methotrexate and other meds, none are cures. Only masks. I am one of those who had no increase CRP or Sed rate, so I have always wondered whether it could be something else. Trying Gluten free in the event it's a gluten problem. On a Lyme protocol in the event it's a disguised form of Lyme Disease. And by going Gluten free, I am forced to avoid the carbs I love: bread, beer, cake, cookies. As I told my general doc, I am grasping for straws.
So are the doctors, they don`t seem to know much more than we do....and certainly not as much as Eileen! She has the knowledge, and has also been there (still is) and done it....how mant doc`s can say that...it would be a different story if a few of them experienced PMR.
I have normal blood markers too - hence the 5 years not being diagnosed! I was gluten-free at the time - it was the only way to avoid wheat in the UK then and eating wheat makes me ITCH! But it didn't stop PMR appearing!
And before you ask - I know it is wheat that is the problem rather than just gluten because I ate UK gluten-free rolls that were made with "washed wheat starch" which is gluten-free but makes bread that is almost normal - and reacted. It is obviously something in the structure of processed hard/durum wheat - I can eat spelt, kamut and Canadian soft wheat (the stuff they use for French bread) without a problem. Even the NHS website says that this is now a recognised thing and there are people who can eat French baked goods - which I had realised while on holiday with a friend on a canal boat. He'd done the shopping before we arrived - and despite knowing I don't eat wheat and being a doctor hadn't put 2 and 2 together. Just as well I am not coeliac because I'd have starved - it was a long way between shops on that particular canal! I decided to risk itching and took extra antihistamines which help a bit - but I was fine!
I prefer to use the word "manage" than mask. Inflammation is inflammation and it causes problems - pred reduces the associated risks of that unmanaged inflammation.
Some of the best doctors we've met have had a family member who had PMR or GCA or met patients early in their career who had lost vision with GCA. They care and do understand much better than the average.
Try Dukan diet. Is very good. And skip potatoes and mashed. Quinoa is a good alternative to carbs. Eat more fish, poached salmon or grill salmon as long is not fried. I am still new to Pred (2weeks) and I have tried my best to go gluten free too. Intolurate to wheat and most of the combinations in biscuits. If these doesn't help if I found a better way to loose pounds I will let you know. Please look into Dukan diet. Good luck
LM
Yes I have been on steroids since July 2015 so likely the diff in our weight gain. I just know I don't want it to gain more so that is why I wanted to hear others experience and formulate a plan for myself. Thanks for your input.
Quinoa is not an ideal inclusion of a low carb diet - it isn't an alternative to carb, it is an alternative to cereal grains. An American 1/2 cup portion of quinoa would contain about 20 grams of carb - a hefty proportion of the daily allowance in a low carb diet which is typically 30-50 grams of usable carb.
I admire your discipline as I know what it takes. I've battled weight issues before so this is not my first walk in the park however with the prednisone on board I wondered if I would have it approach it differently. I actually went gluten and sugar free last June before starting the Pred trying to find relief from the pain by myself. I know they both promote inflammation and
I went gluten and sugar free last June before starting Pred. Anything to try to stop the pain. I continued even after being diagnosed. I started baking with almond and coconut flour but even too much of those things make you gain. I recently went 6 weeks totally grain free, stopped eating gluten free products altogether, no potatoes or rice and only had two small almond flour muffins in the am but no change in my weight at all. I was however snacking on various nuts as well as cheese which although are good for you still are calorie dense I think along with low carbs that I may have to track calories awhile to find some success. I've always had success with WW but not sure I want to go that route now with the PMR. Thanks for the feedback Eillen.
Well my Sed rate and CRP although elevated are not nearly as high as some I read. I love the carbs too of course so just have to resolve myself to life without much of those too. My sis has had ulcerative colitis for 20+ years. Prednisone is used in that case too along with other rx's. She was getting nowhere and finally turned to the Specific Carbohydate Diet to heal her gut. It's very very restrictive. I always told her I don't know how you've done that. She said "when you are sick all the time and it has taken over your life it motivates you !" Now I understand that statement full well!! She was the one who encouraged me to go sugar and gluten free to see if it would help me. We weren't talking about weight loss however but reducing inflammation.
Low carb seems the consensus so far. Darn, another of life's pleasures snatched away, Good you are watching things early and stay vigilant. I tried and failed. :-(
I added 10kg.
The mixture of being less active, fatigued, eating because I couldn't concentrate on anything.
Reduce the carbs and smaller helpings generally. A smaller plate. I needed to weigh myself every day and draw a chart as my weight was up and down by a kg over a day so 207 gm/week was well hidden. But over several months down it came.
Interesting discussion with coronary rehab who weighed me before and after which showed a slight gain, so I showed them the longer term chart with all the natural variation and suggested that "spot samples" were subject to large error.
In simple terms, the engineer in me figured that if I was eating more than I needed I would put on weight, so eat less than I needed and I would lose weight. To a certain extent it probably didn't matter what I ate, as long as there wasn't too much of it.
There is of course the minor matter of what the weight is made of. My fat percentage is down after exercise.
I'm a bit suspicious about "pred caused it". I figure my generally much lower activity level caused it. But becoming more active was an insurmountable barrier a year ago.
PS forgot to mention .... somehere in all that was going on I got a bit older and my at rest heart rate dropped to lower than I can ever recall. Blood pressure normal. No observable problems. I took it as an indication my metabolic rate is lower. Which means I need to eat less.
I've put on over 25kg (55lbs!). Tor the first 6 months I was sugar and seed oil free and didn't put on any weight, but I had a flare and lost all energy to shop and cook and got so fat, so quickly. I'm now back harder than ever and following a strict autoimmune protocol 'elimination diet'... to see if there's any particular foods that I'm sensative to. I introduced eggs back in last week and done nothing but fart ever since! lol
I could not agree more with what you said. It is simple. If we consume more calories then we use, we gain weight. It does not matter what the source of those calories are. Here is VERY simplified version. Body converts all forms of food into basically two cathegories - form of carb that will be used as energy; if we dont use it, it is converted into long term storage = fat. The above is true if we eat carbs or protein or fat. To lose weight one can reduce food intake and/or increase activity level.
Percent fat is much better indication how "fat" we are then weight, another very good point you made.