Hi there! I’m brand new to PMR and prednisone and really want to keep my weight and blood sugars in check. I’ve gleaned from the forums that most people do this with a low carb type diet. To that end, I have joined dietdoctor.com as someone had suggested. They have what looks to be an easy 2 week keto challenge where shopping list and meal planning and everything is laid out for you. Right now easy is what I’m looking for. How ever, I’m NOT looking to start a drastic diet or anything like that. Experience tells me any drastic diet that cuts out entire food groups ( unless you have an allergy) is not likely to be good in the long run. I mainly want to keep my carbs on the low side to prevent prednisone weight gain and developing diabetes. I figure if I start to follow that 2 week challenge I could modify it . An example would be that I like to Take my prednisone with yogurt and I would still do that. I’m concerned about getting enough calcium and this plan appears to be low in that. There are other low carb plans to follow but I’m attracted to the ease of this one. My concern is that it looks in fact so easy that if I found myself going along and really end up following it as written I would in fact be doing keto and I don’t know how that plays into our condition in any way shape or form. Does anyone have words of advice/caution/experience in this?
Keto/low carb?: Hi there! I’m brand new to PMR and... - PMRGCAuk
Keto/low carb?
Full fat yogurt and cheese is allowed on low carb. Good for calcium.
I recommend the dietdoctor site as an easy introduction to low carb and illustrations of what you can and can' t eat - I would never bother spending money though, except on good food 
You pretty much can't do pure keto on pred - the pred triggers the liver to release random spikes of glucose into the bloodstream which in itself takes you out of keto. However, how much or little carb you can eat will depend on you - Snazzy and I can't eat much if we want to lose weight, others can get away with more. So it is trial and error to some extent.
It really is a case of identifying what is OK and what's not - carbs can be hidden all over the place and you need to learn where. I use a lot of cheese - calcium, especially parmesan and co - but most of us on pred are given calcium/vit D supplements and that takes care of that. Never use flavoured yoghurt - loads of hidden carbs. I use 5% Greek yog. I also use it to make sauces - for cauli cheese for example, 1 yog, 1 egg beaten into it, makes a great set custard. Fruit is a bomb, so are root veg - both a common mistake. Above ground veg and salads are good.
You'll get the hang quite quickly.
Thank you. I had a feeling there were caveats to most anything when on Pred. I’m definitely not looking to do keto, just keep the carbs low. And trying to make my life as easy as possible! You are such a wealth of knowledge. Thank you for always taking your time to reply.
You'll get lots of help from others when they come online. Just ask ...
I managed to drop 5 lbs shortly after being diagnosed and that I have managed to keep off, but haven't dropped any further and it is basically been be really reducing carbs, recently eliminated cheese/yogurt and meat, but haven't dropped any weight
I just started keto this week in hopes of jump starting more weight loss. I had lost 25-30 lbs in the last 2 years eating a low/carb/sugar/salt diet, but wish to lose additional weight.
I’m discouraged to hear keto doesn’t work while on pred. The strips indicate that I am in ketosis already even though it’s only been 4 days, however I have not checked the scales yet.
Any suggestions for making keto work while on pred, or any suggestions of alternative food plans. I’ve slowly increased my activity again after a sedentary few months earlier when weather was cold and Covid was new. I do deep water exercises 5 times a week, plus walk, play pickle ball and golf (with a cart) occasionally. I’ve also started drinking more water....what else can I do??
I by no means know any answer to this as I’m a complete newbie but maybe your Pred level is low enough that you can do keto? I’m sure someone with more experience will be able to tell you. But good for you on that initial weight loss!
If the strips say - then you probably are. Not everyone gets the spikes due to the liver releasing glucose into the blood stream which is the reason it is very difficult when on pred. I suppose I should have qualified the statement - everyone is different,
I'm on several Facebook groups for keto and there are plenty of people who have succeeded with keto despite being on steroids for various things. Weight loss is slower but not impossible. I aim for keto but not 100% of the time as have the odd day off. Only lost about 4lbs this year I think but am wearing trousers that are very comfortable now but were much too tight back in March. And shorts I couldn't get into last summer. My shape has obviously shifted even if the scales haven't. And my HbA1C is back in the normal range.
That's the point - low carb works, Keto requires your body to get into a different form of metablism and for some people the spikes of glucose released by the liver take you out of ketosis
I think the benefits of proper keto though are that it can reset metabolic disorders in a way that 'just' going low-carb can't. The ketosis switches your body to burning ketones which has similar effects to the claimed benefits of autophagy achieved through fasting in actually 'curing' diseases. I wish I had the willpower to stick with it for a long time and see, but I yearn for milk in my tea, and the constant changes in my steroid dose at the moment just create hunger pangs all the time - presumably the spikes you mention?
I would agree with that. I've been on low carb - keto plus milk - for over 2 months, and one of the blessings is the absence of a constant knawing insatiable hunger that I had before. I've had to increase my pred dose recently because of a flare, and am coming back down. The hunger hasn't reappeared so far, but the ketostix no longer show so much, as the posts here suggest might happen. Maybe we have to be a little bit more careful with the carbs and cals when on a higher pred dose? Fingers crossed that the wretched hunger pangs stay away.
Yes, exactly. BUT the release of the glucose into the bloodstream by the liver is exactly the same as release of glucose into the bloodstream from food, the pancreas doesn't ask where it came from, it is glucose and needs insulin. Once the insulin has been secreted, the body is likely to be taken out of ketosis and it can take a few days to get back into it.
Like pinks33 even with my morning tea I don't have any hunger pangs at all. I do eat a fairly low amount of carbs, but could do better...
My hunger pangs vary, they are more noticeable if I've gone off plan eg at the weekend I had a few glasses of prosecco and pizza, and it then takes me about 4 days to get back to normal after the sugar rush. I also get mild hunger pangs between 7 and 10 days when I have the D-M injection, which i guess coincides with the highest dose of steroids being released. If my diet is stable from low carb and no binges I don't tend to get hungry at all and only have one or max 2 meals a day, never before lunchtime or after 7pm
In my opinion, high doses of pred, 20mg and above, likely cause your liver to spit out so much glucose through the day, that it will be difficult to achieve ketosis (your mileage may vary). I've had no problems doing Keto at lower doses. Either way, blood sugar control is probably more important than being in ketosis. I started checking my blood sugar after meals and "eating to my meter." Before I even knew what Keto was exactly, I found I ended up eating all the same foods one would eat if following the Keto way of eating.
Very interesting. Thank you for your response. Our step dad lives with us and is diabetic, therefore I have access to checking my blood sugar so maybe I'll give it a try.
I'm currently on 9.5mg, however of note, I've tried getting below that dose 4 times in the past 2 years since diagnosis of PMR, and have been unsuccessful (a return of symptoms/flare). One of my main goals for losing more weight is that I'm hoping another significant drop may impact my bioavailablity of pred, and allow me to lower my dose. I've had success with ending medication for high blood pressure from my lifestyle change and existing weight loss, so this too is incentive. Lastly, I also have OA in my knees and managed to delay knee replacement surgery for the coming year, therefore additional weight loss will help in that department as well.
Despite only eating keto for four days now, as mentioned I did check my urine with the strips and it indicated that I was in ketosis. This may be due to the fact that I have adopted a low carb/sugar/salt diet for some time now. The keto plan helped me focus more on my carb and sugar intake (alas....I am a fruit lover, sigh), and provided me with more salt and percentage of fat. I've got to say trying to get all the fat in is a challenge, and I must watch my salt intake given a history of hypertension.
Just hoping to kickstart the next round of weight loss, especially before the cold weather returns and limits my physical activity. Usually by the end of summer I've worked my way up to consistant, daily exercise, which we know to aid with weight loss.
Onward and downward (hopefully)
When lockdown started I found myself eating far too much bread and was gaining weight fast. So around mid May I started a keto-ish diet, which for me means keto plus milk in tea and coffee - I just don't enjoy black tea and coffee. So far I've lost 12 lbs. I've never been able to keep to a low carb diet for so long before, and am actually enjoying it this time. I eat loads of green veggies, berries with full fat yoghurt (home made) for breakfast, but no other fruit. From time to time I will make some keto sweet treats and keto breads - you'll find those online, and these also keep me from feeling deprived. I've also had no alcohol since the beginning of May, which I think has helped me to keep to the diet, but I don' think a keto or low carb diet actually forbids the odd glass of wine. Good luck with finding a plan that suits you.
I've been with GCA/PMR now for 3.5 years. When first diagnosed I was sent home from the hospital with a diet brochure specifically tailored to this illness. I have not gained weight. Basically recommendation was low/no salt & low/no sugar. No carbs: white rice, pasta, potatoes,bread etc. Sourdough bread ok in moderation (I made my own). Dairy for calcium. No snacking between meals. Drink enough water. A healthy varied plant (mostly) based regime. Take in adequate proteins for muscle health. I have to tell you I felt very hungry in the beginning. This got better as I tapered the prednisone. Occasional treats allowed (restaurant visits for example) but the operative word here is OCCASIONAL. That includes a glass of wine i.e. could have a small glass a few times a week. My daughter (she does not have PMR) joined me on the diet as I do the household cooking and she didn't want me making separate dishes for her. She told me that this diet (well not a diet-it's more a whole new approach to eating) has made her feel great: clear-headed and strong. She's feeling lighter and no longer bloated. We're now both used to eating like this and all the old urges for binging on doughnuts, biscuits, crisps etc GONE.
FRnina, that sounds like a very forward thinking Hospital Department 👏🏼👏🏼👏🏼
I think it’s the fact you can have an occasional treat & it doesn’t harm you.
I’ve lost two stone this year as l was threatening Type2 diabetes by cutting my carbs, sugar & following recipes from the Diabetes Site but l’m not adverse to an odd treat.
Well Done to you & your daughter xx
Oh thank you so much! This seems to be the recurring theme.... very low carbs. Which makes sense. Tell me.... what did you do for protein if you were mostly plant based? To me that would be beans but I’m think the carbs would be too high. I’d love to hear more about this because I’m not a huge meat eater and low carb often leans heavily on meat.
I'm also not a huge meat eater either but the French dietician insisted some red meat and fish calling them 'quick' proteins. So in the beginning I had steak once a week and fish twice a week and eggs twice a week (about). I was worried about muscle loss. Exercise is needed as well. These days I don't eat meat but do eat fish and eggs. Lots of grains and nuts and seeds (lentils, quinoa, chia seeds, buckwheat etc) and all the leafy veg. When I have rice it's wholegrain.
Ah - France! Which hospital is this who uses such a sensible dietary approach? Do you know if it is a local thing or a general approach in France?
Sarah Mackie did say to me once at a meeting she was beginning to wonder if more emphasis should be put on diet. Evidence of it being used by mainstream medicine would be nice.
CHU Gabriel-Montpied at Clermont-Ferrand and my guess is that having dieticians is nationwide in hospitals in France but I'll check. Yes, I think Sarah Mackie is thinking in the right direction: not only diet is important but also where the food comes from. What food are the animals we eat reared on? How poisoned are our fish? etc.... if we are to be well, our food must be good.
It is so interesting that over this side of the channel people are so much more aware of good food ...
Aware and knowledgeable and proud. They take ages going round the shops and markets looking for the best produce and buying fresh bread is a daily ritual. My neighbor said about his garden: 'we only grow things we can eat'.
Local produce here is superb. Not entirely local - but the best fruit and veg in the good shops is all Italian. Supermarkets have stuff from Holland and Belgium, Some is OK - but I refuse on prinicipal to buy tomatoes from Holland when there are Italian ones that have met the sun in Sicily and Calabria!!!
Forget Dutch tomatoes. Tasteless! They have all the growing tech but no sunshine.
Quite - not even a decent texture!!!!
One wonders why they’ve still got the market cornered. Beyond ridiculous.
Apparently they LOOK nice - nice colour, all the same size and smooth. Ever noticed the funny shaped we get in UK supermarkets? Like the ones in the top picture here?
davidlebovitz.com/but-i-do-...
Which actually are pretty smooth compared with those in my supermarket ...
Dutch=bland and regulated. French & Italian = wonky and wonderful.
Dutch pragmatism good for tech innovation but hopeless when it comes to real food. Long-live homegrown.
Thanks! You too well done. Mostly, though, well done French hospital- they take every aspect of food very seriously here in France
I was diagnosed with PMR in Feb 2020 & like you I was mindful of weight gain due to the prednisolone. I got the Diet Doctor app & prior to that I completed the keto 2 week challenge which wasn’t too bad & feel much better & don’t feel as bloated!! I use the app for ideas what to cook, I’m not as strict but for me it’s good to follow something & mentally feel good too!!
Good luck with your PMR journey 🤞
Oh thank you! Good to know! Since you’re recently diagnosed as well, how are you doing now?
I’m doing ok but still have to take it slowly. I’m currently on 10mg (this has been reduced from 15mg) and is being tapered every 8 weeks by 1mg, so very slow progress but required so I’ll be on steroids until next October! It was a shock to the system & me when I was diagnosed but you have to accept it & listen to your body & rest & don’t push yourself too much otherwise it’ll set you back 😩
Yes this is what I’m learning. I’m on a higher starting dose than you do it’s going to take me even longer. I’m really having to continually remind myself not to push it. Have you had any flares and need to go back up in dose at all? Sounds like your slow taper will hopefully prevent that
Please don't set your heart on being off pred by any given day - not even to any set dosage by a given date. It will end in disappointment. You are never heading relentlessly to zero, you are looking to identify the lowest dose that works as well as the starting dose did.
In the early days of the charity a main reason for people finding us was the disappointment and feeling of failure because they couldn't reduce to the timetable their doctor set. Only about a third of patients get off pred in the 2 years that many doctors go on about.
The starting dose did nothing for the actual disease process, nothing except (possibly) tociclizumab does that. You will need pred to mop up the inflammation as long as it is active - and that is a how long is a piece of string question. And nothing, even reducing in tiny amounts, will get you to a lower dose than the amount required by the current disease activity. Going in big steps doesn't work but however you approach it, there is a minimum amount you need.
I just saw my GP yesterday and he just said exactly what you said but in slightly different words. Basically it was “ you need what you need to get the inflammation under control”. He’s done some studying up on PMR I think. 
He’s supportive of whatever I need. I’m glad of that. Now I’m curious what the rheumatologist is going to say. Should be interesting.
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