Is anyone else having trouble maintaining their weight? I know it’s usually the opposite with pred! I lost weight at the beginning of PMR/GCA, then gained a few pounds back. Then I went low/carb, no wheat, grains, etc. I’ve had a couple of flares and lost some weight during each one.
A few months ago when I had a flare my A1c stared to rise when I wasn’t strict on low/carbs. I’m back on low-carb, trying st least! ,but I’ve lost more weight. Toothpick legs and arms and no butt anymore!
Maybe I need more calories? Seems I average about 2000 calories a day, sometimes less, or more if I go off and eat carbs. I’m finding it difficult to amass more calories on strict low carbs. I aim for 40-50g of carbs a day. I’m using an app to monitor.
I walk 1/3 mile each day.
Should I have my doctor check for something else? I had Graves’ disease before PMR/GCA but my thyroid levels were OK 5 months ago.
I’m currently at 12mg pred tapering to 11.
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Mstiles
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After investigation it sounds like you need specialist dietary advice in view of your blood sugar being a bit labile. What weight I lost was due to Pred induced muscle wasting so I too got the cocktail stick arms and legs and a saggy shopping bag for a bum after being very fit. My body was more than happy to put weight on elsewhere which made me not worry about it.
I lost weight on the LCHF diet. I have stabilised at just under 9 stone and am happy with that. It controls my blood sugars well. Initially I lost 3 plus stone but my weight has been the same now for 20 months
The LCHF diet? Is that Lo Carb .... high fibre??? I really need to eat low carb but find not eating bread and potatoes soooo difficult - any advice please?
Well done controlling your blood sugars and losing and maintaining the weight! 😊
Poopadoop recommends recording what you eat normally, cutting a quarter the first week or so, then half and finally get to 3/4 of what you used to eat. That alone will help even if it isn't strictly low carb.
Don't resolve to forbid yourself something - that just makes it all the more attractive.
It takes about 6 weeks for your taste buds to change - and you will find sweet isn't attractive after a while.
No ideas about cutting bread and potatoes out - I no longer want them and with an intolerance of wheat it made life simpler. I love rye bread but resist it, it must be really good before I eat it but when I find one, I slice it and freeze it so I can take out 1 slice at a time and slather it with good butter and cheese - which makes it very filling!
I don’t struggle with not eating potatoes, I very occasionally have 1 small new potato. As for bread I have 1 slice of Hilo bread for breakfast. I keep the loaf in the freezer and take it as needed. I think I am lucky as I love salads and eat lots of that with fish and avocado, nuts and seeds.
You can include some new potatoes occasionally. They have a lower glycemic index than their bigger selves. That means they release the carb content more slowly. There is the idea that cooking and later reheating them also changes the structure of the carbs. So you can use your daily carb unit on new potatoes, or have one day when you add them so you aren't 100% low carb. It's the way I get through it...being 80 to 90% low carb. That means I don't feel I am totally restricted.
You could boil the new potatoes then roast them in a bit butter and glug of olive oil for a satisfying treat. You will find you don't crave the beige carbs after a couple of weeks. But you need to have a good glug of olive oil or another good fat on your veg or salad. It satisfies you better than low fat or the margarines etc. Butter might be saturated but it has no horrid things in it. Last year the WHO presented research that showed we needed at least some saturated fats. These help to support the how the body takes on some vitamins and minerals.
Thanks Poopsdoop for the cooking then roasting the new potatoes. Something things just call for potatoes, like pork roast. I’ll try that. I do use the good fats.
Thank you very much for all that brilliant help and advice. I’m going to read the example of low carb intake also. Thank goodness for all you lovely people 😊👍
I’m admiring your discipline! I struggle to do 40 grams a day. Is Hilo bread a special low carb bread? Would you mind telling me what you eat on a typical day?
I have 1 slice of Hilo bread with peanut butter. No lunch and then a salad for dinner with something like salmon or omelette. I have a dessert of full fat yoghurt with zero carb jelly.
Wow that is rigorous, Koalajane. sounds like not very many calories. I’m hungry by lunch time even though I have eggs, maybe with cheese, also sausage or bacon sometimes and sometimes fill fat Greek yogurt with small amount of berries if I don’t have the meat.
Props to you for finding a plan that works for you with all the other health issues you have to deal with.
Like the others have said it would be a good idea to check that there are not any other health issues causing the weight loss with the GP.
Certain types of Diabetes can cause weight loss instead of gain , as well as other conditions that may have arisen after some time with PMR and its effect on your body as a whole.
After that, it really depends on wether you think that you are suffering more symptoms and side effects because of the difficulty in maintaining your weight , or , if you are losing alot of weight no matter what you eat , and have a weight below your ideal.
I have had weight gain difficulty for years from my other health issues after I lost alot of weight from ongoing Pain and Symptoms .
I don't eat high carbs , I limit my sugar intake , I limit gluten because of the effect on the gastric symptoms I have with my other problems. I also can't replace the calories as easily as many people on a Low Carb / High Fat diet because too much Fat is also not good for my bowel conditions.
I have to eat more smaller meals during a day rather than three average ones and small snacks for the same reason.
And , of course , as you say , your appetite can go completely when you Flare with Pain , especially if you are someone who gets Nausea as part of your symptoms.
Then , any weight you have managed to put back on comes straight back off.
Because you don't always just lose Fat but also Muscle when you lose weight from ill health , either because you don't eat as much or you are less active and lose Muscle Mass , it can also be far more difficult to out this weight back on than it was to lose it.
Just as people whom suffer from being Overweight can 'yoyo' when trying to lose it if they change their diet , for a treat or stop limiting calories.
People , like us , can 'yoyo' in trying to put weight back on , because we find it hard to eat enough calories in the portions we can cope with eating or a Flare stops our appetite.
If you make sure you don't have another health issue that is causing the loss you can feel calmer about dealing with this problem and finding a diet that works for you .
Without Diabetes you can have a low complex carb diet ( limited processed sugar , bread and cakes , pasta , white potatoes and rice ) but include some more healthy , slow burning carbohydrates from additional fruit , corn , sweet potato, and corn and wholemeal products , oats, beans and pulses , nuts and seeds.
If you feel healthier , despite the lower weight , you can allow yourself time to increase over a much longer time without making yourself ill by forcing on the pounds.
Adding extra protein foods in your diet help increase your calories too.
Not lots of red or processed meat , but eggs , fish and shellfish , chicken , white meats , venison , beans and high protein pulses , nuts and nut butters , cheese and offal.
Choose Lactofree dairy products if you need to be dairy free , as if these are fine for you , increasing your intake of milk , yoghurt , cheese , butter.
Increasing your good Fat intake with olive oil , nuts and nut butters of all varieties , coconut products and dairy products.
Basically , eating a high nutrient , low G.I / slow burning , mixed Mediterranean style diet eventually helps you put on the weight healthily in a way that lasts.
If you have no appetite you can keep your calories up drinking smoothies with a smaller meal , or for breakfast ( include any sort of milk , yoghurt, banana , any nut butter or coconut cream , a handful of oats vary flavours with unsweetened cocoa , a little honey and vanilla or mango and blueberries).
You can also have juices with fruits and vegetables .
Toasted Coconut , roasted unsalted nuts , popcorn , seeds , homemade oat bars and muesli can make nice higher calorie snacks that don't make the high blood sugar spikes if other snack foods.
It's not all eating either.
You may find you don't go back to your previous weight ( if that was your ideal ) or plateau in your weight gain until you feel well enough to do more activity as I said earlier sometimes those last few healthy pounds only return when you can build Muscle again.
Just as people whom are overweight can plateau on a diet ( or can gain) when they exercise because the Fat they lose is balanced by the Muscle weight they put on.
That's why alot of weight loss or gain new thinking considers the tape measure changes more than the pounds.
Hope you get some answers soon as it can be worrying .
If your weight loss is a natural side effect of being ill on Flares then you know , as you recover ( as long as it doesn't drop too low or cause extra health problems ) that you can relax more and experiment with foods , find a diet you can cope with and enjoy and the weight will slowly return.
( I'm still not back to my ideal weight , and it took me three years to add on 1 and a half stone even while on steroids , as weight loss sounds great in theory but can be the opposite weight problem for some of us )
Take care , if you ever need any more diet ideas you can PM me if you like , Bee xx
Thanks Bee for your thoughtful and detailed reply. I’ve cut out a lot of the foods listed to try and stay at 40 grams of carbs, but finding it really restrictive, i.e. no grains, tiny amount of fruits, no sweet potatoes, beans, etc. Might not be getting enough calories.
I also have Graves’ disease and have lost weight with PMR, no butt and thinner legs. I think the thyroxine interferes with pred as my TSH levels went a bit haywire so I had to reduce my thyroxine but it’s been tricky getting the balance right. I take my thyroxine at least an hour before pred. I eat a lot including carbs and have gained a couple of kilos but nothing like my pre PMR weight. I’m also coeliac.
Ive just seen a rheumatologist who says the weight loss was down to my body fighting the inflammation though I think the thyroid is very relevant. I also had thyroid profile including T3 and T4 blood tests done but privately. Clearly, the reason the TSH test is the only one normally done by the NHS is down to cost.
Yes it’s tricky figuring it out. Right Before I was diagnosed with the PMR/GCA I had gone off methimizole as my thyroid levels had stabilized. Since pred the thyroid levels have been OK, somewhat lower, T3 especially. had them checked 4 months ago but maybe need to get tested again.
It’s a tricky balance.
Is thyroxine the same as methimizole? I’m in the US.
I only ever get the TSH test so not really sure what T3 is. Do you have other thyroid tests? I’m afraid I’ve never heard of the drug you take . I will ask about that although I’ve never had an appointment with an endocrinologist . In the U.K. Our general practitioners tend to deal with thyroid issues but don’t have specialist knowledge.
I’ll have to look at my notes to see exactly, but T3and T4 are also produced by the thyroid and interact with TSH, and in Graves the TSH is low and T3 and T4 rise too high. I think that’s right. You can also get tested for antibodies. I used to be active on the thyroid forum but I’ve figotten some of the info. There are experts over there too, just like here.
Do they ever do the full Thyroid Profile for you , including the Thyroid Antibodies?
You have to fight tooth and claw in the UK to get them to do more than , TSH , T3 and T4 , but sometimes they don't show up everything that is going on and the full group of 6 tests show that changes are needed .
I'd agree with the general advice to see your doctor just to have this checked. I posted recently about also having lost weight on preds (I wasn't on any special diet, just watched what I was eating more carefully as was initially concerned about possible weight gain). I also had the PMR symptom of losing weight before I was diagnosed (again not everyone has this). It could be that your calories are now just too low. But I'd definitely have this checked.
I too have got skinny. When I was diagnosed with PMR four years ago my GP warned me steroids waste muscle and would change my body shape and I would end up like "a lemon on two cocktail sticks" ('s OK, I liked his sense of humour). My bum fell off too - annoying as all my clothes are now baggy.
I was diagnosed with GCA a bit later and read somewhere that one of the symptoms is weight loss.
I have had a flat bum all my life , turns out it can be a part of my other health issue , EDS.
My bum is always the first thing to lose weight and last to put it on , which is very annoying when there is little padding there to start with.
Equally annoying is that I have an ample chest , which causes extra back ache , and that is usually the last thing to lose weight and first to put it on , " Murphy's flipping Law"!!!
My old boss when I was in my twenties , a very animated Iranian Man , used to see me moving around and say , " Sticky , sticky , where's you bum , do you keep it in a drawer?!!!"
Luckily , I have quite a laid back sense of humour about it myself , so found this very funny.
Oh yes , all my life I did wonder wether that was why I used to be a high jumper , lanky legs and top heaviness helping me naturally fall over the bar!😋😂😂😂
Ha ha! Gotta love your doctor’s sense of humor. A lemon on two cocktail sticks described me perfectly! Lately my boobs have also gone somewhat missing, or maybe it’s just that they’ve slid downward more.
Has any type of exercise or diet helped you with this? I’m walking some and that’s all at this point.
Ditto with the boobs... For exercise I am trying to get back to a bit of local walking, which is the best I can do after a recent stay in Coronary Care sorting out atrial fibrillation. As for diet, I'm afraid I eat what I like and it makes no difference to my weight. Just at present I'm hitting the carbs with a vengeance 🙁
I have not regained the few kg lost when first diagnosed two years ago. And not for want of trying.
I started on 24 mg pred and have tapered to 5 mg without a flare. I eat whole food, plant based with minimal animal products. I suspect high fibre is a factor in limiting weight.
I lost at diagnosis too, and during flares. When I was diagnosed I cut out wheat, sugar, white foods, etc. I got off track last spring after a lot of stress and didn’t walk much. My A1c went up so I’ve been trying to get back into my routine with a strict low-carb diet, but I don’t think I’m getting enough calories, or maybe the lack of grains, carbs, bread isn’t helping. Hard to balance the whole thing.
Have you found any type of exercise helpful in gaining back muscle?
Sugar and refined foods are not part of my diet. While I don't eat much wheat, I do eat other grains sparingly. I make my own sour-dough, multigrain, spelt/rye bread and eat plenty of nuts and seeds. I am wary of oils.
Gaining weight on unprocessed plant food is a challenge. And, as for exercise, I likely do too much for weight gain. I play tennis and badminton, run, skate, cycle and do aerobics twice a week and gym three times a week.
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5mg too high for adrenal problems, please?
time to get real!!, the goal is learning to live with PMR
Too much too soon’
Could this be PMR too?!
Now on the LVV journey too
