Hello. I only discovered this forum today. I've been a member of the PMR/GCA forum for a while, since I was diagnosed with those conditions last year. As I'm on daily steroids (Prednisolone), I've given up added sugar and white carbs, not easy at first as I used to be a cake fiend, but easier than I anticipated. I'm definitely overweight, but at least have come down from the 'obese' category. I did give in to the ravenous steroid hunger for a while and managed to put on over 20 pounds as a result. I've lost most of that but want to lose the rest plus a bit more. As I have osteoporosis and refuse to take bisphosphonates, I'm trying to improve my bone density by diet and exercise. Obviously with osteoporosis, I don't want to become really skinny, but I'm aiming for the top end of the 'healthy' range, about 10 stone for my 5'3 height.
New Member: Hello. I only discovered this... - Healthy Eating
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Hi Marijo1951
Welcome to the Healthy eating forum. I hope you'll enjoy participating here - and do have a look around our various Pinned posts and Topics, and most of all, I hope you're having an enjoyable weekend.
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You seem to be making progress, so well done! Because of your bone issues, I'd be wary of a low-carb approach since that can cause weight loss of water rather than fat initially. This can cause you more osteoporosis challenges.
The big question is what you are replacing your white carbs with. My hope is you are increasing the whole foods. Given your medical condition and drugs history I would strongly recommend the Paddison Program or similar. I followed this and was in a wheelchair with arthritis, now my weight is normal, no drugs anymore and I live a full life. You can watch the TedX talk by Clint Paddison here.
youtube.com/watch?v=G96U17h...
Thanks for the welcome and the advice. I certainly haven't cut carbs, just replaced the simple 'white' carbs with whole grains and extra veg. I watched the talk which resonated with me as one of my daughters (now in her 40s) was diagnosed with RA when she was only 14 and placed on a drugs regimen, mainly strong painkillers rather than methotrexate. We were given no advice about her diet or lifestyle. However she had already become vegetarian and less than a year after her diagnosis became a vegan, for ethical reasons rather than in any way connected with her condition. Almost immediately her pain diminished and she was able to stop taking the painkillers. Since then she has been largely free of pain in most of her joints, although she has had problems with her finger joints recently. However the doctors say she isn't suffering from RA.
As for me, I eat what I suppose is a 'conventionally' healthy diet, including meat, fish, eggs and dairy, but largely plant-based. I am considering becoming vegan or almost vegan and certainly cutting out dairy. This will have to start after Christmas though. We have booked a meal in a hotel and I've requested scallops followed by venison...
I'll just add that I take methotrexate (15 mg per week) as a steroid-sparer, as I had two serious flares when I was trying to cut my prednisolone to 25 mg per day. So far it seems to be doing the trick, but I shall be glad when I can finally stop taking it.
Pred is not easy to cut, very addictive. Expect those reactions when tapering.
Well, I reduced to 10 mg per day last week and seem fine now. I'm lucky in my rheumatologist in that she doesn't expect me to cut down very quickly unlike some that I've read about.
I'm baffled that PMR and GCA is even a thing. I wonder what's going on there? These things were incredibly rare, historically. They'd get written up as case histories in medical journals so that doctors who had never seen them (and probably never would) could understand them.
Please keep us updated on your general health - I'd be very interested to hear how your dietary changes are affecting your symptoms.
From your response to andyswarbs, it sounds like you're rather "sitting on the fence" with your diet: you've realised that the standard Healthy Diet isn't healthy, but you feel uncomfortable moving too far away from it, right? Are you eating low-fat foods or restricting fat generally? You might want to try a "classic" low-carb high-fat protocol for a few weeks just to see what effect it has on your general wellbeing. If it doesn't work for you, well, no harm done. There's a group for LCHF: you could lurk for a while and see other people's stories. There's another member there who has the same issue as you and is having good results with LCHF.
The point here is that corticosteroids do make you fat, but the primary mechanism is a repartitioning effect (they modulate the effect of insulin, forcing your body to store carbohydrates as fat). Your appetite increase arises as a consequence of food being stored as fat when it should not be - you have no choice but to eat more to replace that 'stolen' energy. If you can keep your carbs to a minimum level and derive most of your energy from dietary fat, your baseline insulin level will remain pretty low, and the problem should be noticeably reduced.
"Obviously with osteoporosis, I don't want to become really skinny"
I don't really understand the connection. If you lose fat and put on some muscle, this will protect your bones to a certain extent. Muscles hold your skeleton in shape, whereas fat is just dead weight. In any case I'm sure you're aware that progressive osteoporosis (among other unpleasant things) is one of the consequences of long-term steroid use, so I really hope you can find a way to get them out of your life. I realise you're basically stuck between a rock and a hard place here, but I think you're doing the right thing experimenting with dietary interventions. Good luck.
PMR is more common than GCA. I think in the past people just expected to get 'rheumaticky' to some extent. All the aches and pains of old age were probably lumped together. When it was first isolated as a separate condition, it was called senile rheumatic gout. I'm glad they don't use that any more - it would make me feel 10 times worse. It's a sad compromise to have to take a kind of poison to be free of crippling pain and stiffness or the risk of going blind and yes I do know that prednisolone is likely to make my osteoporosis worse. Weighing below about 9 stone is said to be a risk factor for osteoporosis in that fractures are more likely at very low weights.
I don't eat low fat foods e.g. I can't bear low fat yogurt as it just tastes like sour water to me. The advice to go to a LCHF diet contradicts other advice to go vegan, something that was successful for my daughter as I explained and also in a different way for my granddaughter. I often think that Michael Pollan's advice 'Eat food, not too much, mostly plants' is the best available. Yes, perhaps I am 'on the fence', but don't underestimate the achievement of giving up cake making and cake eating as it was part of the essential me as recognised by family and friends.
>> it was called senile rheumatic gout. I'm glad they don't use that any more - it would make me feel 10 times worse.
Weighing below about 9 stone is said to be a risk factor for osteoporosis in that fractures are more likely at very low weights.
>> well ... a "risk factor" is not the same thing as a cause. It's merely a statistical association. Also, low bodyweight is not the same thing as a low bodyfat ratio. The explanation could be that people who don't weigh very much have exceedingly poor musculature and low bone density. Without vigorous exercise, we can lose an enormous amount of muscle as we age - typically up to 50% by the time we reach our 60s - and that's the usual cause of older people being underweight.
>>I don't eat low fat foods
Good
>>The advice to go to a LCHF diet contradicts other advice to go vegan.
Yes it does. But you don't get only one shot at this. I wasn't suggesting that there's One True Way that must be adhered to, merely that you could try different approaches and see which one works.
Most people find veganism punishingly restrictive. They simply can't stick with it. But perhaps you can, and perhaps it'll work. LCHF is much, much easier to adhere to and (statistically speaking) has a high success rate with diseases that involve inflammation. There's a fair amount of solid science linking high-carb diets to generalised inflammation, so it's worth trying. If it doesn't help, well, move onto something else.
My comment about 'sitting on the fence' was an observation that LCHF also contradicts mainstream Healthy Eating advice - there is no compromise position. You have to pick one or 't other and go "all in", because the two are diametrically opposed. Hovering in the middle tends to cause precisely the problems you outline (eg., massive carb cravings) while delivering none of the benefits.
>>I often think that Michael Pollan's advice 'Eat food, not too much, mostly plants' is the best available.
I'm a big Pollan fan. Did you read his book? Bear in mind that LCHF has a huge real-food bias. It is mostly plants, and rejects synthetic rubbish like margarine and low-fat yoghurts.
Thanks for your prompt response. I would probably find veganism less difficult than many because I've eaten so much delicious vegan food over the years from my daughter who is an excellent and imaginative cook. I'm also starting to dislike meat, especially steak, only because I've recently begun to find it very irritating when it gets stuck in my teeth. I've also lost much of my taste for cheese, which I used to love. My main sticking points would be fish and eggs which form a big part of my daily diet. I love it that I can buy 3 large bags of frozen mackerel fillets from Iceland for £10. Perhaps 'flexitarian' is the way to go.
That should work out fine. I don't see any point attempting to eliminate healthy food that you still enjoy (eg., eggs and mackerel) because they're going to be critical source of fat and protein. If you genuinely don't like meat, I can't argue with that (and I know what you mean about bits getting stuck in your teeth!).
Anyway, let us know how you get on. It's always informative to see how these things pan out.
Yes, it's funny how we change over the years. The bits in the teeth has always happened, but now the irritation seems to outweigh the pleasure. I'm thinking about dental floss before I've finished dinner...
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