Since I had to increase pred because of resurgence of GCA in summer (up to 15 from 0.25 now on 9) I am using a continuous glucose monitor (CGM) for a couple of weeks.
The pred spike was very noticeable. I estimate it can start anywhere from 2 1/2 hours after eating and go on for around 7 hours. My post breakfast meal readings are Ok, as are evening meal when eating at 6.30. In the middle it can get wacky - the same food at lunch causes a far bigger spike than in the evening.
The last time I did CGM I was on 3mg and I didn't notice any spike. My friend who is on 5mg pred with a CGM for complex reasons says it is noticeable at 5mg.
For people who struggle with blood sugar there is definitely value in timing meals and treats.
Interested to hear what others have found. I think it may have been Snazzy ? who reported spikes around 4 hours after pred. Good wishes, all. X
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As you say - perhaps a standard pattern! It does make me wonder a bit whether it is something they should do a study on so they can be a bit more proactive in guidance on diet and how it can be adjusted best when on pred to reduce the risks of steroid induced diabetes. The fact that you can't just say "don't eat" but time of eating is significant makes it all the more interesting I think.
Yes, I think this would be very helpful info for people. Massive salad (9 ingredients including kimchi) with egg, cheese or houmous. Add a slice of organic wholemeal and it goes up a mmol so I think I'll cut that out for now. The thing I most noticed was that a slice of homemade pizza at night was 2 mmols less than at lunch time.
Probably a not inconsiderable amount of carb in that salad depending on what you put in it. Wholemeal or not - at least 12g carbs in that slice of bread, another 7 in 50g hummus. But the timing thing is really interesting.
I don't usually eat until lunchtime or often much later - just lots of cups of tea having effectively taken my pred at 2am (Lodotra) and it isn't a problem having done it for years.
Without the bread, it goes up within normal parameters; with the bread a bit over. It's the full-on carby meals in the pred-glucose zone that cause the big spikes.
I'm thinking that in the zone, baseline goes up overall by one or two mmols.
Hi PMRpro, just looking through this thread and found your comment 12g carbs in a slice of wholemeal bread. Given that you are the oracle on all things diet etc... wanted to check as I have been working on 25g per slice. Here's hoping that I have been wrong which means I've been v low carb...grasping at straws here....
I slice of white bread that weighs 25g has 13g of carbs. A slice of wholewheat that weighs 33g has 17g of carbs.
It depends on the type of bread and what it weighs - thin or thick cut, small or large tin. Do the packs not list the nutritional values? Safest is to weigh it!!!
Slice my own but have been using the general 25g measure per slice, no packaged bread. I have lost a stone in the last 3 months despite heavy pred doses as being very strict, no cakes, biscuits, puddings. Only concession is teaspoon of honey on breakfast yoghurt. I'll weigh the bread in future, thank you.
Impressive!!!! I've gained a couple of kilos over the summer - was at my daughter's for 2 months. She is vegan and meals tend to be carbs with a side of carbs!!!!
I told Dr Mackie all about my findings from wearing the CGM, she was fascinated. I said why not run a trial for people on steroids and she said she'd never be able to get the funding. I don't see why not, CGMS are getting cheaper and cheaper. Compared to the costs of monitoring and treating people with T2D
Bet she could do a pilot with volunteers - though the actual framework for a study is not cheap either, Though the money saved on dealing with side effects would be immense I;d have thought,
yes, I noticed when I took my pred at 8 a.m. with breakfast my spike started around 12 noon and lasted until about 6 pm. For this reason I eat my breakfast and then don’t eat my next meal until 6.30 p.m.
I found this out by testing a lot with my glucose monitor. I have also discovered that now at 3.5mg of prednisolone my spikes are not nearly so high. I have my hba1c blood test tomorrow so will be interested in the results. Hopefully I will still be in remission
So this definitely looks like the pattern. I commend your willpower not eating during the day!
Let us know how your hba1c goes. Did you use Freestyle Libre, btw? Did you come to any conclusion about how close, or not, its hba1c estimate is to a blood test?
No I know that - but I wondered if a no carb meal would work too. Some people struggle with TRE (time restricted eating) although a smallish study did find that it improves blood sugar control in T2 diabetics - so increasing evidence it has its place.
I'm similar, I don't often have breakfast but if I do try and eat it soon after takign the Pred before the glucose rises and try and keep it low-ish carb. Every now and then I'll have muesli with berries and nuts as I miss it and oats are a 'good' carb. Otherwise I eat after about 5 or pm and can then eat pretty much what I like and my glocose still stays in the green. I do try JI's tips of eating the veg first and any carbs or sugar last so maybe that helps? It makes sense that BS also depends on the dose of Pred. So many people when they first start Pred and are on about 15mg pile on the weight rapidly, I know I did. We didn't know all theis science then and the GP blamed me because he said steroids don't cause weight gain they just ncrease your appetitie so you eat more which I protested wasn't true. I've been told so much crap over the years by doctors 'who know best' that I've pretty much lost all faith in them
I've just discovered Jessie Inchauspe aka The Glucose Goddess who has written books and recorded loads of videos on Youtube including one with Tim Spector in the Zoe series of podcasts. She has 10 simple hacks for controlling your blood sugars which are especially useful for those of us oon Pred who get a glucose spike from that let alone even without eating carbs and sugar. When I get time I'll do a fuller post on it as it would benefit us all
Thanks TC, it's a good vid. I did several of these hacks last time I was lowering blood sugar via CGM when on low pred and kept some of them up. But I wonder how well they will work when on higher levels of pred. For instance I did a 40 minute walk after breakfast and registered very low mmols, but an hour later when the zone started, they went up. Then around 6pm, the readings reduce - it's weird to see. I think I'll go as low carb as possible in the danger zone till I'm under 5mg. Also, I think she has an overly relaxed attitude towards bread, and I am not convinced putting yogurt on chocolate cake will do anything other than ruin it... I may try her antispike formula if it's not too pricey. 🙂
There is a bit of very dubious science there - yes, the yog might slow down the spike due to the sugar in the chocolate cake but actually even plain natural yoghurt has carbs so you are ADDING to the load. The only true "hack" is to cut the carbs, not try to find excuses to keep eating unhealthy food. I suppose I need to watch it ...
Completely agree. She should have said chocolate cake with salad. What I don't understand is why a spike (over quickly) is worse than the same amount of increase spread over a longer period??
Spreading it over a longer period means you don't get to the high levels that represent danger I suppose. But as I just said in my other reply - with a reference - it's aimed at the worried well for whom the odd spike isn't a real problem. She is out to make money - like so many of the authors of the magic "hacks" all over the internet.
I don't remember that bit about cake and yoghurt but it must be part of her 'put clothes on your carbs' hack. Cream would presumably do the same thing as it's fat rather than carbs. I remember the examples she gave, perhaps in other videos, I've watched a few now, like if you are going to have toast put avocado or peanut butter on it, which I guess would lower your GI load.
She does say 'if you really have to eat bread etc' ... I haven't read the books but she's a biochemist and actually isn't telliing us anything we didn't already know, just trying to make it easier for us than saying cut carbs and sugar out totally
And now I have looked a bit further - here is a review of her claims. I agree with the diagnosis - a high profile "influencer" who is profiting from catchy and easy soundbites aimed at actually healthy worried well. It isn't appropriate for anyone with a glucose metabolism problem.
Yes, it felt like I wasn't her audience; also how she presents is very irritating. Some of the hacks are from ZOE and are useful for type 2, as your link says, but it's about separating the valid from the dubious.
Sitting with my monitor waiting for the pred-glucose zone.
I can't see anything controversial in what she says. The ZOE programme advocates eating the veg first and doing some kind of exercise after eating as does Michael Mosley. Eating a savoury rather than sweet breakfast makes sense. I can't remember the other hacks off the top of my head so will listen again
Thanks for posting this it was really interesting. Unlike others I eat all bloomin day, not high carb stuff but I eat!! Then about 6.00pm I'm not bothered... clearly the reverse of what is good for me... arghhhh
I have no idea re blood sugar levels no one ever does my bloods. My weight is the same but I know I've lost muscle and gained fat! It was definitely pause for thought though as I'm trying to reduce from 6.5 tp 6 and some days I could fall asleep standing up! Maybe looking at my diet might help that. I do eat pulses but no bread, potatoes, pasta or rice, and no sugar.
TC- this is so helpful on many levels. I’ve read your blog above too re Zoë. After about 12 years of PMR I’m now suddenly ‘ pre- diabetic ‘ which I want to address. I certainly don’t want this to progress and was told by the Dr just to lose weight. I always thought I ate well but I can see now that breakfast of oats with sugar, or muesli, or delicious whole meal toast and marmalade has set me up with a big spike at the start of the day. I will certainly incorporate the hacks above. I love celery and radishes and avocado etc so that’s so easy for me to eat at any time. A bit of vinegar on a sliced tomato- perfect ! Thank you so much. I am delighted to find this information and have a new plan.
Lunch is the real 'danger zone' after your blood sugars have already risen from the Pred and a sugary breakfast beforehand would make things worse. I found that if I was going to have carbs like go out to brunch occasionally, to do it early within an hour or so of taking the Pred and 'put clothes on the carbs' eg one slice of quality bread eg wholemeal or rye toast but with eggs, smoked salmon and avocado or halloumi. I sometimes have oats/muesli as they're a 'good carb', but in the evening, with nuts and berries. Unfortunately I can't eat yoghurt so just with milk but a protein or Greek yoghurt would be good with it. Someone told me about Baked oats recently which sound delicious but I haven't had a chance to make them yet. Let me know how you get on. It will probbly take 3-6 months to see the results in your HbA1c but the weight loss is pretty quick when you change your diet. I can pile it on again very quickly though, in a matter of days, such as on holiday, if I go back to eating carbs 3 times a day.
I don’t know my HbA1c score so I’m off up to the surgery to get that and my ‘normal’ Dexa scores. I’m not hungry til brunch time in any case so I can easily skip the bread on the eg poached eggs/avo/smoked salmon plate. My next visit to chemical pathology i.e. cholesterol clinic is early March so I have plenty of time to put this into practice. I had already noticed that eg a cheesey scone and a flat white with my daughter was enough to make me feel fluey and fatigued so I had an inkling. I knew that anything obviously sugary like soda bread and marmalade would make me feel ill. So I’m delighted to realise ( clunk click !) that there are changes which very definitely need to be made. And I don’t need to go down the ‘tasteless food forever ‘ joyless route. ( it’s someone’s moniker on here. Made me laugh !)
As TC says, timing has a big impact on blood glucose when on Pred - the 6 - 8 hour zone which starts around 2 hours after pred when things should be low carb because spikes occur. Of course, everyone is different, but I don't get spikes at breakfast even though it is carby. A CGM can show individual patterns. By the way don't know how much pred you are on, but at very low levels then spikes much less likely to be big, so may be an overall issue of glucose in your metabolism - same action needs to be taken though. Also, for cholestrol, plant sterols can lower this.
I'm not convinced I need to lower my cholesterol. I think our bodies are meant to have fats, well 'good' ones anyway. Too high glucose for too long or too many glucose pikes seems to be linked to developing metabolic disorders such as diabetes but I haven't found much to convince me on problems stemming from cholesterol. There is a correlation between cholesterol and high glucose and obesity and they all seem to go together, ie a bad diet will affect cardiovascular, but I don't think you can just pick on the cholesterol element and say its a direct cause. There seems to be plenty of contradictory opinions on this with the expert cardiologists all disagreeing with each other and arguments for and against statins. This article for example
All research has flaws and biases and vested interests so who knows what the truth is. Eating more plants seems to be a good idea so it's a good job I like broccoli and kale😆
I love my food and a mantra I got from a vegetarian friend is 'there isn't a meal that can't be improved by adding cheese'. I also bought a revolving spice rack that is out on the workstop so whenever I cook something I give it a twirl and choose some herbs and spices to throw in. They count under Tim Spector's mantra of trying to eat 30 different plants a week. And I love throwing fresh basil leaves into things, it's so aromatic eg with buffalo mozzarella and tomato and tenderstem broccoli, nom nom. I'm not a vegetarian but have cut down on meat especially the processed stuff like bacon and ham and I eat loads more veg than I used to, I make a conscous effort to do so. I usually have a plate of veg or salad or veg soup before a meal which makes sense as it is the mediterranian way and all the experts like Tim Spector say it can help reduce blood sugars. I bought some umami stock cubes but haven't got round to using them, they are supposed to be a flavour enhancer. Be careful with stock cubes, many have MSG in them, Gallo are good. I'll stop now as all this talk of food is making me hungry. There are loads of low-carb and keto cookbooks and online recipes out there if you want some inspiration
Well, we're learning about these things all the time, but I feel more comfortable lowering my 'bad' cholesterol by natural means - I did a post on it - I used a plant sterol supplement without any additives, a netto supplement and lost some weight. I didn't reduce fat intake. I would never take statins.
We are vegetarian and eat around 12 portions of veg a day, plus just about achieve TS's 30 a week, though the last two are hard, even taking spices into account! Using CGM I never found a salad before a meal made any difference.
I was going to wait until 5mg to retry CGM but I am on 7 now and my taper has stalled so this may be longer than I thought. I am having so many treats in the pred zone, I am going to have another blast next week...
I only did one experiment, eating the same evening meal with and without a plate of vegetables before. It might have helped to eat that way but I can't conclude either way on that one example. I confess I don't know anything about plant sterols so will read your post on them when I get a mo, thanks for the heads up. 12 portions of veg a day is very impressive. Do you think it helps with inflammation?
I can only trust it must be contributing to overall health... But since I am now 3yrs 9 months into GCA, having got down to 0.25mg, can't say it's helping that, I'm afraid. There is hard evidence on plant sterols so well worth a look-see.
I thought about buying that but I already have too many cookbooks and I don't think it'll tell me anything I don't already know as I've read so much the last 5 years. Otherwise I would
No exactly. That’s why I want to read the report and get the numbers. After standing cooking for a weekend of guests I had really sore hips. It felt different to PMR. No groin pain, no fluey feeling, no depressed mood which are my usual symptoms so I wondered about an osteoarthritis flare. With rest it went away. I’m ex armed forces and I’ve done a lot of mountain climbing with heavy packs or running in DMS boots in my younger days. Arthritis wouldn’t be surprising.
My sore hips are bursitis - greater trochanteric pain syndrome covers a lot!! Standing is my bête noire. And then walking a bit further than usual carrying anything hammers it home! And it never hurts sitting or resting!
Had a my usual wonderful rheumy appt today - mention of the hip pain resulted in 2 steroid injections. Not sure if they had lignocaine in them - they usually do but they didn't hurt which is usually due to lignocaine - but I walked out in less pain than for literally years! He happened to mention that a great deal of my back problems have to be put down to a scoliosis.
Ah! You have suffered a lot of medical issues. No wonder you know so much with intimate detail ! And interesting as I have at least one bursitis and scoliosis too ! Supposed to be stable but who knows as one gets older.
I think I’d be pleased (??) if the hip pain on standing was due to the bursitis and not osteoporosis/ osteoarthritis. Not much to be done about the latter and yes rest made it go away. Learnt something new again on this site !
I worked in the NHS and medical field for many years too - plus I have a physiology degree. And do a lot of research to be able to answer questions here - keeps me out of mischief ...
Osteoporosis itself is painless - what causes the pain is any fractures that result from it.
I’m sure it’s a full time job. And I appreciate your knowledge and background immensely. So many other sites contain uneducated guesses from people meaning well but with no real scientific basis.
Well, not quite fulltime - but the Inbox is always open! I get to do lots of other things in parallel.
It was the uneducated guesses and actual misinformation that was around 12 or so years ago that grabbed my attention - I was doing 2 other PMR/GCA forums at the time which was more than enough. But slowly we got people to transfer here because one was very small and the Patient.info one had become very unwieldy and difficult to use. The Patient one was really where all this started when 5 women met there and started working towards setting up the charity. It was really good and SO well moderated, absolutely no rubbish allowed there and that is the example I have tried to follow.
And still so very relevant. So many people find this site and say it’s a revelation. So much missing from the usual health channels. I suppose a reference to this site on the digital NHS guidelines would be out of the question and no doubt it would really become more than full time .
I don't know. There was talk at one time of an approval system for health forums like that, sort of Michelin stars to indicate this was a safe place that the NHS was happy about and we were under consideration, but I never heard any more. The LupusUK forum is linked to their charity which is superb with several paid staff. No idea how they are funded. Some doctors who do understand the value of what we do do recommend us.
I'm sure I've got trochanteric bursitis in one or both hips, I had it before many years ago when I first got PMR and it feels the same. Bursitis seems to go hand in hand with PMR, and frozen shoulders. How can I get it checked, do I need an ultrasound? I used to have a great GP who sorted the first one out with a steroid injection but he's left now
Christian listens to the story then pokes over the bony bits in the hips until the patient squeals loudest!!! He doesn't need to try many times - he has unerring judgement.
my old GP was like that, and spot on, he knew exactly where to press. I'll try and get a GP appointment and if that doesn't work will see if my rheumie can help. The last physio I saw inisted on me using a theraband and leg exercises to ease it even though I said no amount of exercise can shift PMR-type bursitis it needs an injection, but I got nowhere and my pleas fell on deaf ears
Someone mentioned gluteal tendinopathy recently - I had wondered if that was what I have and Christian said yes. We discussed various approaches - physio comes high on the list but we know it doesn't work well for me, more action increases the bursitis. The extracorporeal shockwave therapy was good the first time with 4 sessions close together at the right intervals - and that hasn't happened in the other two because of scheduling difficulties. Steroid injections of course - and that was the option today - see how it goes, the last one for the SI joint has been brilliant. And the option for the future is PRP, platelet enriched plasma.
They have used one delivery of kits and got about 70% success rate for what they used it in - will get it regularly from early 2025. And I am on the list. My daughter has had it in Brid for a mangled knee meniscus and said at the time it had made a massive difference. Might be worth reporting that to Sarah ... It is available in the NHS.
Thanks will do. I've just Googled gluteal tendinopathy and it looks exactly like what I'm experiencing so will ask about it. We're diverting a thread that started out about diet so I will start a new post about bursitis sometime with useful info from your experience etc all in one place so people can find it.
Yes, I saw your post. Very sorry about what happened.
I am organising a scan for January, it will be 3 years since my last. Thought I'd be well off the pred by now but I'm not and am not very hopeful of the results.
Well I’d usually put a dollop of olive oil and salt and pepper on mine- but one of the hacks from the glucose goddess was a tablespoon of vinegar in a glass of water .. 🤔 tomato is also supposed to have some cholesterol lowering qualities so I extrapolated and decided a teaspoon of apple cider on a sliced tomato would be a good thing and more palatable
This is a really interesting post and not something I was that aware of. I have had PMR for over 6 years and my last Hba1c reading was 44 putting me into the pre-diabetic range. My GP referred me to the NHS diabetes prevention programme and I'm taking part online. There is some good advice on diet and I'm trying to make changes to reduce the amount of carbohydrate I eat but I'll now be more aware of when I eat certain foods.
I was threatened with being put on T2 diabetes meds because my HbA1c was around 50 which is why I did the Zoe programme and learned to control glucose without any meds. As the late great Michael Mosley used to say in his books, the meds just make things worse not better. And as for the useless NHS advice like having a base pyramid of carbs like potatoes and bread and fruit for a 'healthy' diet, I despair ....
It wasn’t me reporting the spikes 4 hours later. I never measured my blood glucose. I did say something about the Pred effects like being uncoordinated and wobbly.
I’ve been off Pred but have found that high carb or sweet stuff at lunch make me feel ill at ease and a bit unwell. Since stopping Pred 4 years ago I still have to be careful with carbs such that simple carbs don’t appear routinely on my plate.
It was a regular contributor, I wonder who. Perhaps they'll turn up. Sweet stuff has that effect on me on an empty stomach. I couldn't face the thought of a chocolate bar. Not bread, unfortunately ...
I was started on high dose Pred after an emergency hospital admission with sudden onset of both PMR & GCA at Christmas whilst in the US.
I am type 2 diabetic, previously well controlled with just one Metformin per day for almost 20 years.
Of course, 70mg Pred sent my BS levels into orbit and I ended up on insulin for the first time, which I am still on 9 months later.
I have a Libre CGM and know exactly what you mean. Whatever I eat or even don’t eat at lunchtime, I can’t stop the rise. I’m only on 10mg Pred now and had hoped that this would lessen.
I use a biphasic insulin which I was told would help. When I recently asked the diabetic nurse re this problem, she said don’t worry, it doesn’t matter that they rise so much as long as they come down quickly which yours seem to do. She was only looking at the previous 24 hours which is what they do, obviously remotely. I’ve not been seen since February!
It really annoys me that I can’t have a simple sandwich at lunch time like most folks but I’ve learned to live with it, although I am not happy about it!
I also love fruit but that sends me up like a rocket but obviously it drops as quickly. I’ve just adjusted the (tiny) amounts of fruit I have to indulge myself!
There’s nothing more disheartening when you deny yourself paninis, cakes, sweets etc at lunch with friends yet you still get that spike😡
I have turned my high glucose alarms off now as it was depressing!
Getting PMR & GCA have been an awful life changer, but in terms of everyday living, it’s the steroid induced hyperglycaemia which has been and continues to be the most difficult to live with. The only plus is the weight I’ve lost👍
Oh dear, what a pain, double whammy! How disheartening. Well, as I said, based on the experience of me and my friend - I didn't notice any spike at 3 or 2 but he (Type 1) sees it at 5, though it isn't a big issue for him. From what my rheumy implied I think we could start noticing a gradual reduction around 7 -6. It's all individual though.
Out of interest, are you able to see from your figures whether the spikes have got better since January?
The only good thing is that following the healthy eating and lifestyle as in ZOE and Mosley is generally beneficial to health and wellbeing.
You said, "the same food at lunch causes a far bigger spike than in the evening."
Interesting that, as I found that I can't eat cheese during the day, or I fall asleep within the hour, and am out cold for at least an hour, yet in the evening I can eat as much cheese as I like, and it doesn't seem to affect me.
So now my lunch consists of three or four thin slices of ham, and a small amount of coleslaw. Anything else sends me to sleep very quickly, but just ham and coleslaw lets me stay awake in the afternoon. Having said that, I do still fall asleep after lunch sometimes, just not very often.
That's a weird one, MiniSpec. Not sure it has to do with blood sugar. I often have a siesta, but then I always did. Unfortunately I have just made the mistake of sitting down to type this rather than getting on with things and I feel a snooze calling...
Interesting. I get reactions to some foods that are high histamine whih includes cheese and ham. I can only eat these things after taking a histamine blocker first thing in the morning. Otherwise I can't even tolerate tea. I can tolerate far more things later in the day which is presumably because the steroids have kicked in and suppressed reactions? Before I got the Cimetidine random things would just cause a sudden slump, more than just drowsnesss... as if I'd been drugged and I couldn't do anything til it passed about 3 hours later. I wonder if you have the same thing? Have you tried keeping a food and symptoms diary? Other things that cause this reaction for me inlcude anything pickled or fermented, pepper, wine (not that you have that in the morning presumably) malt, walnuts, tea and coffee .... a long list but what they all have in common is high histamine ...
I have found glucose spikes much improved when I am eating low carb. If I slip over to higher carbs in the diet the spikes are quite noticeable. When I first started this Mularkey at 60 pred I realised I would have to watch the carbs and it seemed to pay off for me. I managed not to gain weight or starve myself either.
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TIMING OF 55 MG OF PRED...OR SOMETHING ELSE?
Low dose pred timing 
Timing of taking prednisolone 
Hydrocortisone instead of pred 
Tapering Pred - Blood Glucose Levels
