I've just led a Zoom discussion on low carb eating and in doing the research for it, it got me thinking
Apart from the back pains, which I won’t bore you with today, I’m feeling pretty good and I think I’ve figured out why. Yes it’s partly to do with being full of the joys of spring and yes I am quite a resilient optimist at heart.
But I feel physically better and actually pretty sprightly, charging along on my rollator. Unfortunately the broken back prevents me from hopping skipping and jumping but there is a big smile on my face.
You know there’s a saying that out of something bad something good happens?
Well, as a result of the spinal fractures I lost a lot of weight, quite quickly. Like I think about 2 stone. I’d been doing low carb eating before that but weight loss was slow, maybe a pound or half a pound a week and it was very up and down, partly because I don’t have great willpower and eat more carbs than I should, especially on holiday and out and about . My HbA1c was also stubbornly high and in the diabetic range which I couldn’t understand because I thought my diet was pretty good tbh.
Well, last time I had a diabetic review in October 2024, I was told to my great delight but surprise that my HbA1c level was back to normal. That was much better than I could have hoped for.
I’ve just twigged what I think has happened. As a result of losing a lot of weight very quickly, this solved my metabolic syndrome and insulin resistance (that I didn’t know I had) and y voila, that has sorted out the diabetes. Turned a vicious cycle to a virtual one.
It gets better. As I have been feeling well, I thought I’d try and reduce my steroids. I had been stuck on 11mg for ages. So a few weeks ago I went to 10, no problem at all. So went to 9. No problem so far. (I didn’t go directly to 10 but did it tentatively, trying a day at 10, then 2 days at 10 and so on). I haven’t measured my inflammation by CRP as there is no need, after 13 years of PMR I know when things are under control. I can raise my arms easily and get out of chair easily without making too many ‘oofs and old people’s noises which are my acid tests of whether my PMR is nder control or not.
I’ve posted before abut my experiments with Continuous Glucose Monitors (CGMs) and I’m currently having another go. Again I am astounded, my blood sugar readings are so much lower than they were last time I did this. I really think losing the weight has pressed a magic reset button, a bit like switching a computer off and on again and then it works again.
So, I conclude it is that losing weight quickly, (I can’t claim credit as I think it was the broken bones what done it – apparently it is common as your body works so hard to try and heal itself) - combined with eating low carb, has ‘cured’ my diabetes AND I’m sure, also lowered inflammation, enabling me to reduce my steroids. It’s likely that the hydroxychloroquine (HCQ) that I’ve been on for a while also helps as it enabled me to get from a very high steroid dose of 25 before I stared on it down to the current dose of 9 today. But it has to be that losing weight and low carb eating has also lowered my inflammation. And this had motivated me even more to ‘finish the job’, do keto, lose another stone and see if things improve further. I’m trying not to get carried away but daring to dream after so long stuck on huge amounts of Pred that I can get down to a really low dose of steroids. Watch this space! Provided I can find the motivation to do keto or very low carbs with all the temptations of Easter eggs and holidays looming ahead.
I’m writing this partly to make myself accountable so that in 3 months time I can come back with more good news. If anybody has done keto or is doing it and got results please inspire me so I can keep motivated and not go buy Creme eggs and Hot Cross buns
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Thanks TC. I also lost about 40 lbs. after fracturing these vertebrae, mainly because my back muscles were spasming so tightly and wrapping around my diaphragm and stomach, that I could only eat half portions. Now I've slipped off the low carb wagon and wanting to get back on. I have an overactive sweet tooth and a neighbour who loves to bring me treats. Your post is very encouraging. My bloods are all within normal range, however, going to bug my new rheumy, when I actually see her, for cortisol and acth, as I'm down to 3 mg. My shoulders, arms, hips, etc. are singing loudly today. Had a spine xray this morning to check for new fracture. In all honesty, I think I'm flaring, but GP won't have it and has dropped me to 2 mg. Grrrr.
love that line overactive sweet tooth I'm going to steal it, You could well have active PMR still going on there arnd hte only way to sort that out wuld be more Pred, but they probably don't want to give you that because of the osteoporosis. But it's supposed to be a joint decision
Well done! Bravo! Your joy is almost tangible-I’m so happy for you 😃.
That was the praise and now the warning! DO NOT buy Fatter Eggs or Scream Eggs!! How will you feel if you succumb compared with how you feel now? You would be kicking yourself 5 seconds after you swallow the first bite of that sweet, sickly, sugar-loaded, no nutrition item that will be stuck in your teeth and round your gums and playing havoc with your conscience and you know it! So there! 💁
Big round of applause to you! We have to think of what success will look like. I'm trying to see it as I'm making choices rather than that I'm denying myself pleasure Interesting, M&S used to do a simnel cake but when I was in there the other day luckily they didn't have any. Maybe the tradition has died out?
Aldi had Mr Kipling's Simnel Slices this week. Having great resolve I quickened my pace down the aisle. Yeah! Turned the corner at the end, back down the opposite aisle, left turn up the original start point and they jumped into my trolley 😋
So glad you posted this TC. We started on a low carb diet about six or seven years ago after my husband was advised to by his chiropractor (he's into overall health). Then, after I developed PMR after the vaccine, I decided to do whatever I could to improve my chances so I researched and joined one of Sarah Myhill's workshops online. I was very surprised to find I was pre-diabetic (something my GP didn't bother to mention) and she strongly suggested the paleo/keto way of eating.
I took this up seriously and kept to very low carbs - my husband also. I was soon out of diabetic range and lost just over a stone. Peter lost 2.5 stones and was almost too thin to look at, but felt great. We avoid dairy as he has mild prostate cancer and dairy is full of growth promoters.
Anyway we lost the weight quite quickly and were both amazed - as you say it was like pressing a re-set button. My mind became very sharp as well which was a surprise.
Inevitably things slip a bit, although I've never put weight back on. Then, we moved house at short notice a week and a half ago. It was very stressful and I think that over the course of about 9-10 days we probably lost half a stone each. Again, I felt better for it and, during all this I only increased my pred twice for a couple of days each time even though I was living on adrenalin. Also, I carried weights that I would not even begin to pick up during this time and no ill effects! I also found that it is perfectly possible to sleep sitting upright with no support!
Of course, now we are just beginning to see the wood for the trees, we have decided that we must apply ourselves more diligently again and adhere to the guidelines. Seeing your post has just strengthened our resolve!! So, thank you. I, too, believe that I shall be able to reduce steroids more successfully now.
Do you follow Richard Mathews Keto Facebook page? He is Canadian and had PMR and now promotes the keto way of life.
Anyway, so glad to hear it is making a positive difference for you and thanks again for posting.
That's great and ispring to hear, I hope you get back into a good routine once you're settled. Funny when I was going through al my old notes pputting the presentation together enough I did glance at Richard's paper that I must have downloaded many years ago, called Inflammation as Richard sees it or something like that. Maybe it's an old version. He was technically wrong on many aspects like adrenals but I got the gist about trying to lower inflammation by diet and avoiding stress and am very interested in those aspects. Stress can do more harm than the steroids I'm sure. What I can't find info on is how our bodies cope with stress when on Pred. A normal person stress would trigger hormones like adrenalin and cortisol, but as our adrenal glands are suppressed as they are not needed while on steroids, what physiologically happens to our bodies under stress? Maybe that's why we get flares when stressed, because our bodies can't respond in the usual way? Who knows? The best solution in the meantime is to minimise stress by chaging our reaction to it, mindfulness techniques like 'dialling up the relaxation'.
Yes, Richard has updted since then. Things become clearer all the time with so many things. I am just pleased that I don't need to increase the steroids as a result of the move - and I am impressed. So, once back on a stricter keto I hope to reduce more easily from here. I am so pleased you are feeling the benefit.
Gotta add something here, have either of you tried F I N O, a relatively new restaurant in Cromer, per chance? Nothing to do with PMR, of course, though as you're mentioning both Cromer and food, I thought I'd ask. Good to hear you're feeling so positive, tangocharlie😍
👏👏well done !!!Just to share on your final sentences…..saw an advert last night for Hot Cross Buns with sort of crème egg in the centre…kill 2 birds with one stone maybe?? Must obviously be less calories …..not!😁
In the interest of finding out to save all from sinning I bought a packet (my son was insistent)😉…huge disappointment ! Stodgy and liquidy sickly goo in the centre..not crème eggy at all. So feeling very virtuous to have trialed said beasts, only had 2 bites ..rest donated to happy son who can basically eat anything and never a pound out on!
Well, many thanks, August 7. You are obviously ready to sacrifice your taste buds in the service of this forum!! Does sound a rather ghastly experience. But good for your son - they do have their uses, I know🖐️
A lovely positive post to read. Congratulations! There is a lot in the literature about carbs (sugar) and the effect on inflammation in the body. I have no doubt you are right.
Did you manage to record the talk this time? I would love to have joined, but was working.
No I'm too shy to go on record. We (the Yorkshire PMRGCA group) are thinking about having some zooms in the evening for those who work or have other duties. But later in the year, I'm breaking up for summer now
Well done you TC,what a trooper you are with all your horrid spinal issues,always upbeat as well!Think you deserve ONE hot cross bun over Easter and a medal!Think you are 100% right about spring and the warmer weather,makes one feel SO much better,more to think about than all our ailments.Big pat on the back for you!Sending best wishes to you .xxx💐💐🥇😜
I do have the odd day off, usually a Saturday (after my weigh in at Fat Club) when I eat anything I want and it doesn't seem to do me any harm on the scales. Just to let my body know I'm not starving it. And keep up profits for M&S food stores because the world would be a sadder place without them.
We shop with M & S and we are not rich. You do need to shop slowly and carefully and just buy what you need (well maybe a little extra here or there). We never get a shock at the checkout or have to put anything back. The quality is a lot better than some supermarkets that we used to have home delivery from.
Too far for me to travel I am afraid.Our nearest one is a £34 each way taxi ride so would really push the prices up!Quite happy with Mr Tesco and Aldi.Though I do love M@S Xmas adverts!xx💐😜😄
ooh that's interesting, I never thought of myself as being analytical but I like the word, I'll take that as a compliment as and yes I do like to try and understand things and question things, not just take things at face value. Otherwise I wouldn't be on here now. It was all due to a rheumatologist giving me some totally wrong information that I found this wonderful community. Many thanks for the encouragement x
I am going to post this once more and then never again - feel nobody’s listening 🥴. I am convinced that my PMR steady pain free tapering with no flares is due to my diet: minimal carbs, no sugar, no processed foods, no alcohol, maximum doses of supplements D3, K2, Ca, Omega-3, NO TREATS. I found that cutting sweet things out TOTALLY caused any cravings to stop quite quickly. If you then do get persuaded into ‘once in a while won’t hurt you’ you wish you hadn’t weakened - desserts etc taste disgustingly sweet and it takes a few days to feeling back to normal again! I have blood tests every 6 weeks and so far everything is coming back midrange normal.
I am going to post this once more and then never again - feel nobody’s listening 🥴.
Who/what do you mean -nobody’s listening? I see you have replied to a couple of posts about carbs, but you cannot know how many people have read or acted on those replies.
Yes, you’re right. One thing that isn’t normal since PMR is that I get tired, frustrated and irritated more easily. I don’t understand condoning/ sympathising with weak will which results in feeling ill and I don’t understand the health service pushing pills instead of educating people in improving their diets and lifestyles - but that’s obviously just me! Feeling particularly out of sorts this morning - you can blame Trump
Interesting, I am now down to 8mg with Pred & no troubles so far. I agree with you re diet & the NHS. both my wife & myself follow a ‘good diet’ little sugar as possible, lots of fruit, mainly whole foods, fasting from 6 pm to 08.30 am, we are told we are very good for our ages so it seems to work. Done it for ages but unfortunately PMR still struck me last July . Grrr!
PS we did have a sourdough pizza last night so occasionally we fall from grace but not often!
Wish I had your willpower CC!OK when on lower doses of magic pills but on higher doses the sweet cravings keep beckoning me.Trying to be more in control,guess it will get better,I hope as I get lower AGAIN!xx💐😜
I agree with you - I may have had PMR a long time and it has had effects after 20 years, no doubt of that. But on a fresh food diet and not that much in the way of carbs and when they are included they are minimally processed I don't think I have had a lot of the problems many complain about. I notice the difference staying with my vegan daughter - food tends to be carbs with a side of carbs! Plus they use far more processed items even if they do cook from scratch most of the time. My Hba1c hasn't been above 40 ever as far as I know ...
I offer solutions that we know from experience work - and I too don't feel much sympathy for those who just don't try the tried and tested approaches but still come back with the same problems again and again. But at the same time, I know that there are others who HAVE tried it and benefitted - it is just they rarely think to report their successes. Don't feel your words are wasted.
I have been aware for some time that my approach to diet and exercise has gone off the rails a bit. Being diagnosed prediabetes is the best thing that could have happened. I have always been aware of my family history but didn't take a lot of notice. Now I have sat up and taken notice. Barely 24 hours with no sugar or snacking and lower carbs and my mind is sharper and energy levels are better. It can't be just because the sun is shining here 🌞
all good news? Well, not your broken back, for sure! I lost a stone in about 7 weeks on the keto diet & reversed my diabetes! But it was hard to keep the keto up because my husband needed a normal diet (medical needs) & it was hard work…& I wasn’t well myself (not PMR related). Now i need knee surgery after a fall (ripped my meniscus), & think I will be told to lose some quickly by the Surgeon! I only eat between 1pm & 7pm, & had been following the fasting type diet…but cheating as I haven’t walked without crutches or bad pain since 9 January!! It’s hard dieting when you’re in a lot of pain & unable to exercise, isn’t it! Well done & I hope your back eases soon. S x
Wow wow wow, well done. Exercise has many benefits but isn't vital for weight loss. Hope you get the knee sorted soon. I was sitting in the hospital waiting room the other day waitng for my ehumie appointment. I was surreptitiously reading a book on obesity as I felt I had to hide it as just about everyone in the waiting room was seriously obese. It further aded to whether there is a correlation or even causation between obesity and illness. Did those people get fat because of the hideous pain they're in making it dificult to move? Or the meds they're on? Or just bad diet? Websites like those for arthritis still offer out of date advice on eating loads of carbs so even if they try and help themselves they're getting wrong info!
Oh, no, I agree, exercise not vital for weight loss…but having to sit around a lot,get a bit bored, browse through supermarket web site f buy stuff I shouldn’t, & wouldn’t normally buy!! I’m not sure, is the answer! I was tubby & fighting weight gain almost from birth! At my school it was really cool to have a nickname & I went through, age 11 - 17 being called Tubbs! But it was an honour,not a horrible name!! I remember having to go down to 800 calories a day when I was 17 in order to lose weight. Mum wasn’t happy, but I was overweight, & it was the only way. So I’m biased & think it can be genetic. Most of my extra weight went on in first year of PMR, 3 stone of it. Since then I haven’t gained a pound, but only did that keto diet once & no other diet. But I’m obviously now eating the right amount of right foods to keep my weight stable (small portions, only eat between 1pm & 7pm). When I see what other people eat, I’m amazed, just flabbergasted!! But I think the fattening sugar loaded cereal with full milk, then white bead, lots of butter etc carb lunch, then crisps & chocolate somewhere along the way, topped up with takeaway fish ‘n chips…it’s ok sometimes, but every day it piles on the weight. Some people are fat because they have little money & bread & potatoes are filling & cheap. I think. And could apply to some of your waiting room folk! Hope you got on OK!! S xx
We have a family member who is seriously morbidly obese, so much so that she has a blue badge because she finds it difficult to walk. I try not to judge, but I don't understand, and I really hope she can get some effective help before it is too late, if she wants it that is 🙁
That’s brilliant news, so pleased for you. You’ve inspired me to try a bit harder and stop feeling sorry for myself. Thanks for a great Zoom presentation yesterday!🌸
I wish we'd had more time to chat individually. If I ever do it again (and I've said to Yvonne remind me never again 😆) we will limit numbers to say 10 to make it more interactive. Keep in touch and let us know how you're getting on putting it in to practice
Thank you - great webinar. I joined you from New Zealand - eyes propped open with matchsticks. Thanks also for the set of resources you sent out after the session.
I’ve been eating low carb for over 20 years - my body seems to be particularly sensitive to carbs and this has always worked for me. Typically would be 30-50 gm per day.
Once I noticed the weight piling on (at 50 mg Pred) I cut back to about 30 gm per day. But - the weight continues to pile on. I was also diagnosed with T2D and now take Metformin. MTX was added in 6 weeks ago - and the weight gain accelerated. 62 to 70 kg in 5 months.
I’m stopping the MTX - cost of the super unpleasant digestive and bowel impacts just not worth the potential promise of some help. Oh - and liver enzymes enthusiastically climbing skyward after only 6 weeks.
You mentioned 20g carbs per day. How do you achieve that?
I drink tea with milk. Each one of those costs me about 2.5 g carbs. Four cups and I’m down 10 g carbs before I even get started on any food. Thinking I’m just going to have to lose the tea and milk to get anywhere.
Weight loss in the Prednizone is currently feeling like a losing battle for me. Have run out of ideas.
No chance. I’ve eaten this way for years. Since noticing the weight gain in Prednisone I’ve used an App to track my daily intake. My body is particularly sensitive to carbs so I’ve learned to basically est only vege and protein. With the odd treat - a little of what you fancy does you good.
I noticed in a comment you made a year ago in reply to someone else’s post that, for some people, weight gain continues despite a low carb diet. Do you have any more info about that?
What about fats? They're a vital part of keto. In fact on keto support groups if people are struggling the advice is to up the fats, put virgin olive oil or mct oil on your veg. You're supposed to get about 70% of your calories from fats.
Hi TC. I've been following up some of the authors you mentioned - interesting to see that Jason Fung recommends vinegar as a protective factor. I used to drink diluted Apple Cider Vinegar many years ago - time to restart that habit.
I've also been thinking further about the carbs that are added each day through my "tea with milk habit". You can take a girl out of Yorkshire, but you can't take the Yorkshire out of a girl. 😉
I discovered that milk creates a disproportionate insulin response. Here's the link:
Hi,I am doing <20g carbs on keto and it works really well for me. I'm not hungry. I am on 10mg pred/day. I mentioned this book on T's zoom call a few days ago. You should be able to get it in NZ, certainly from Amazon. Michael Moseley The Fast 800 Keto recipe book'. It allows you to have more calories than 800. The beauty of it is that there are lots of very tasty and easy recipes with very low carbs. Let me know if you try it!
Thank you for the reminder. I have followed Dr M for several years and have a number of his books, including the keto ones. Will go back and take another look Such a sad thing that he died suddenly last year
I think it’s clear that all the “tea with milk” during the day is my sticking point. That’s easily 10g carbs. I’ve moved to only one proper tea, first thing in the morning, almond milk in coffee, and drinking turmeric/cinnamon/nutmeg/cardamom tea. Thus should help me get closer to the 20g a day mark.
Make sure it's his Fast 800 keto recipe book. It's a bit confusing because he has four similar books...The Fast 800 keto; The fast 800 keto recipe book, The Fast 800, and The Fast 800 recipe book. I have all four! What's good is that the recipes are often for 2 people, sometimes 1, sometimes 4 or so, and if you are only one person then these smaller recipe portions are ideal. You can easily freeze another portion or so.
It is confusing all the similar titles. Also I didn't get on with the 5:2 idea but it also achieves good weight loss results etc so still not sure in my head how that compares. Maybe I need to go read them all again in the right order.
Your Zoom presentation was inspirational. Having already started to cut down Carbs I’ve been feeling much better and have so much more energy! Definitely going to move on to more Keto ideas. I love the soup recipes and they are very filling and freeze so well. Maybe we should have a page of shared recipe ideas?
Oh that is nice to hear, I am glad it was useful, it's reinspired me doing the research for it (ie I've given myself a good kick up the @rse). Let us know how you get on with it all
Yeah. you're right, who knows? So many people say oh I don't do that Facebook nonsense but then many Boomers and older are on it to share photos of grandchildren etc.
Thank you for sharing your good news and wonderful that you are so positive - it's certainly something we all need to be, but I admit it's difficult at times. My 5 years has had its ups and downs but I too stay positive (mostly). You are amazing and a great example to us all. Thank you again TC. x
Your talk and your enthusiastic post seems to have gone down a storm!! Well done!!👍🏻😃And many thanks for sending out the slides of the talk - much appreciated👍🏻
The zoom talk was given by tangocharlie and she sent the talk slides out to me as I could not take part that day. Ask her if you are interested. See her most recent post a couple of days ago or you find her in this thread. B w
I too am dealing with spinal fractures, but there has been no subsequent weight loss. You have motivated me to be more strick about low carb eating in the hope that I can also lower my A1C which increased after being put on statins a couple of months ago. (Ignore the Lindt chocolate bunny sitting on the table! I'll think of it as a decoration only...) Thanks for sharing.
I, too, used low carb and intermittent fasting (16 hrs overnight, only black coffee in the AM) combined with a VERY slow taper to get off prednisone completely and have been free of PMR (and steroids) for 2.5 yrs now.
I notice when occasionally I do splurge on carbs my arthritic finger joint flares up, so they clearly trigger an inflammatory response in me!
My blood glucose level has remained stubbornly in the pre-diabetic range even off the steroids. If I eat carbs like the average person I would be diabetic. I take Metformin and keep carbs ~50g/day to keep things stable.
Very interesting that you feel the effect and that you feel the low carbs and IF helped. I wonder why your BS is still prediabetic? According to Jason Fung, metformin doesn't raise your blood sugar but can still raise insulin, and it's the latter that causes insulin resistance and metabolic syndrome. He basically says diet meds make the problem worse. If I were in your situation I'd be tempted to try without the metformin for a trial and see if that helps? Worth asking your GP if you could try a break?
I watched your zoom a couple of weeks ago and it spurred me to take action. I'm already feeling the benefits of changing what I eat, both numberz on the scales as well as feeling better in myself. I've not eaten or even wanted any cakes or biscuits and I'm not hungry between meals so I'm not snacking. Thank you!
That is FANTASTIC news. Now if only I could practise what I preach. Keep it up and please keep me posted how you get on. I'm thinking of having some kind of follow up session in a month or so where we can all compare ow we're getting on
Nice typo there in the group name, I think we should rebrand 😀. We've missed you, at some point we will have an evening Zoom so the workers can join in .
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Can anyone advise on weight gain/loss?
Weight loss due to PMR?
prednisone and side effects/ dosage related 
It's good and bad news.
