Hi, I'm not sure if this has been shared before, but I couldn't find it? I have joined the weight loss group too as I'm tired of lugging my 'steroid baby' around. Would like to share this link, it may help someone in the same position
Pred and PMR weight loss: Hi, I'm not sure if this... - PMRGCAuk
Pred and PMR weight loss
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Artnmusiclover
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DorsetLadyPMRGCAuk volunteer
MrsNails maybe worth adding to Weight post in FAQs when you feel up to it?🌺
Thanks, that is interesting. When I first started pred my doctor said that any weight put on would be lost when I stopped taking the steroids. This article says that us not so! In my case I did not actually put on weight, as I was quite careful in what I ate. I also assumed the fat accumulation round the waste, on the face and neck also went away when you stopped taking the steroids.
Me too, I've been so frustrated that despite trying hard and losing one and half stone I've hit a brick wall and stopped. I'm in the slow process of yet another taper. I've learned to be more patient after 3 attempts
That is a lot of weight to lose. It is really worth going slowly when reducing. It is hard work.
It took me 16 months to lose that. I'm tapering by 0.5 mg as I have reached 6mg 3 times and been hospitalised two of those times. As soon as I hit 7mg I start to struggle so I have learned slower is better
But remember - however slowly you go, you won't get below the buffer of "lowest effective dose". When your body rebels a few times at about the same sort of dose - you need to take notice 
This is why I love this forum! My rheumy is eager to get me down and said 1mg per mth! I follow more what is said on here tbh hence the 0.5mg reduction. My appointment is in June and she said at the last app to just keep reducing at the 1mg rate as she wants to try something else alongside pred...but its got to be as low as possible. I have no idea what she will suggest. I don't want to risk being shot up to 50mg again but know she will be angry if I'm no lower than 6mg (she complained when my GP suggested increasing back to 10mg the last time I reached 7mg) I'm settled at 10mg but she wouldn't be happy. 🙄
What rubbish - if you get that low, there is no longer any point "trying something else alongside pred". At 10mg being as low as possible MAYBE it is worth trying methotrexate to see if you can tolerate it, not that there are any guarantees that IT will get you much lower or off pred. It works brilliantly for SOME patients but by no means all. And she needn't try telling you there is proof - because there isn't. The study is yet to be done, not even recruiting yet. Prof Dasgupta, the UK GCA guru, feels there is little place for methotrexate in GCA.
I would also be interested in her reasoning that you need to be as low as possible BEFORE trying whatever she thinks is better. That makes next to no sense.
Well said, an excellent summary of what we know and don't know about MTX. The theory of taking MTX is a seroid sparer to be able to take a lower dose of Pred but there is no evidence it'll work. Anecdotally on this forum we hear it works for some but we also hear of horrendous side-effects. I'm just about to start the injection form as a last resort, worth a try and am trying to be hopeful it'll work, as Leflunomide, Azathoprine didn't do anything and I can't get below 20 mg Pred. Dr Mackie is convinced it CAN work on PMR even though her research hasn't yet got off the ground
But not always ...
We are one step on the way to the study aren't we? It has a name!
So I can now read up a bit from here about Methotrexate 👍...she just said 'i may try something else..get as low on pred, 1mg a month!' I ignored the 2nd bit and took advice from this forum so she'll be miffed I've taken it slower than she wanted!
I honestly feel like an experiment...I am going to ask that question! She wants to see me presenting symptoms 😡 I was annoyed at this...its because I was so comfortable at 10mg I was bright n breezy and able to move easier! I'll give her presenting symptoms..I can't hide them now! I will let you know her answer lol...thanks
PMRproAmbassador
Few things I'd dispute slightly in there though it is pretty good.
Fewer calories isn't the trick with pred - it is fewer carbs, lots fewer carbs!
The "several small meals" mantra has been disproved - it actually results in people eating MORE calories. And with pred it increases the risk of developing steroid-induced diabetes as it contributes to a longer raised BS level than interval fasting and low carbs.
For many people the reduction or removal of pred DOES result in weight loss although if you don't lose weight it is no use just shrugging and waiting, you might have to be proactive. Everyone is different.
However - it is possible to lose weight even while on well above 10mg pred by being really disciplined about carbs. It is just harder and slower!
I have lost about a stone and a half adopting a low-carb lifestyle but it has taken over 2.5 years and it's a rollercoaster ride, I can vary about 4lbs a day and sometimes the weight goes up for seemingly no reason. Water retention may well be part of it. The overall trend is down, but very slowly, less than 1/2 lb per month on average. I do notice that if I stray too much and start eating things like the odd slice of bread or potatoes or wine the weight rapidly piles on. Also despite my efforts I've recently been told my HbA1C is now in the diabetic range so I'm going to have to really focus, it was OK until recently and I don't know if it's because I've had too many off-plan days or whether it's the long term high Pred dose.
The fewer carbs worked better for me than fewer calories as I had been eating so much (pasta and rice are my favourite). I became diabetic prior to the initial weight loss so I cut the carbs down after reading on this forum but I've plateaued now and its just not moving. Maybe I need to cut more, or even avoid completely occasionally. I had considered trying the several small meals so I'm glad you've given me this info! Thanks for the advice
Being type 2 in remission I have chosen to miss out lunch. I discovered that it was around noon that my sugars spike from prednisolone. So I eat around 6pm when my sugars are back to normal. I did tell my diabetic nurse and she thought it was a good idea. Your body soon gets used to missing out on meals
Thanks for this info! I'll keep this in mind 👍
The sugar spike is not at the same time for everyone but from testing I have found that it is then that I get it
Thanks for the info. I usually miss breakfast and lunch and just have one meal early evening. But I seem to have drifted into having a small snack around lunchtime as the Pred makes me hungry and I'm wondering if that's one of the reasons my HbA1C has gone up? I've tried to keep low carbs like low-carb wraps from carbzone.co.uk/ I had to have a chat with the diabetes nurse who I have no confidence in as she has previously told me to eat more fruit and eat brown bread instead of white - she is clueless about carbs which makes me angry, how many people is she misinforming? I have a friend who is T2D and with the aid of metformin etc gets praised for keeping her BS in the 60s even though she eats a load of crap, yet I'm criticised for mine being 50.
How annoying 🙄 ...my diabetic nurse said to watch the fruit! I honestly think there are more knowledgeable people on this group! Thanks for the link 👍
I bought her a copy of Dr Michael Mosley's The Blood Sugar Diet but I doubt she's read it. She just thinks she's right because that's the way they've always done it and not keeping herself up to date. The RCGP is fully behind ensorsing low-carb eating, as are the diabetes charities, but news is slow to trickle down and be adopted by many GP practices
Fantastic 😁 ...though like you say she probably hasn't read it! She really does need updating doesn't she!
I've got another phone call with ther in a few weeks' and am already chomping at the bit .... From what Michael Mosley says taking meds to manage diabetes without changing your diet is not the answer, it makes things worse
For a start, what we get is not Type 2 diabetes but steroid-induced diabetes. I could tell from her raised eyebrows and puzzled look last time we met she didn't know the difference
You're right!! If anyone asks am I diabetic I always stipulate its steroid induced...its one of those things that niggles me to be honest
But it is what a lot of diabetes clinic nurses are leaving patients to do - encouraging the idea that if you take medication you can carry on your bad habits. Same with statins - that's fine, I can carry on eating pies and chips ...
Chippy tea tonight then 😋 ...was jesting but got fish in my head now lol
I will eat the odd chip for the taste but that's enough. I eat loads of fish - though not in batter!
And the batter is my favourite bit 🙊
And 'I'm not being funny' as they say in Yorkshire, but she's not exactly thin herself. When doctors used to advise on diet (they are reluctant now to say anything I'm told by a friend who is a GP) their advice was to to tell us follow the stupid 'NHS food pyramid' of high carbs and low fatand eat less, move more. Many scientists now hympthesize that following the wrong advice has actually led to and caused the obesity and diabetes epidemic. On a TV programme about it recently Michael Mosley said that the NHS has researched the effectiveness of all their advice and shown it to be wrong, but I don't know what study he was talking about.
No - the increase in obesity, diabetes and heart disease all track the increase in carbs in the diet. Not proof but very suspicious. The "eat lots of small meals" as well - increases the calories overall because people don't count and keep to the same total. It also maintains the BS level higher than it need be - especially if you are on pred.
It is strange it happened because it all went against real science from the start - same with cholesterol, the liver makes it, not eating it can't make a lot of difference. Well, I say it is strange - no it isn't, money talks and it suited the food manufacturers to use HFCS in producing food - cheaper as an ingredient than fat and keeps food moist, "tasty" and extends the sell-by date massively. And the profits ...
Statins seem to be a big Pharma con, there is no link between cholesterol causing heart disease or that statins help. As we have discussed on here in the past, many leading heart specialists say the same, yet GPs insist. It can't be right, a conflict of interest, that they get a bonus for putting people on them.
Not the NHS but there are these:
ncbi.nlm.nih.gov/pmc/articl...
ncbi.nlm.nih.gov/pmc/articl...
PHE report:
gov.uk/government/publicati...
Will read with great interest, thanks
😁 we say that in Lancashire too!
You know if a Yorkshire person starts a phrase with 'I'm not being funny but...' they are going to be pretty blunt!
😁.....yes...that applies here too! I have been asked if I'm from Leeds...we can tell the difference in the accents but others struggle
Michael Mosley says stick to apples pears and berries when it comes to fruit, and in moderation. Yet the nurse was telling me to eat bananas and oranges!
Thanks for this...ive been eating bananas! I thought they were perfect for that boost of energy 🙄
The odd one is probably OK as they contain good things like potassium, but they are effectively high sugar. I have the occasional day when I go off piste and eat carbs that are good for my guts, such as oats or rye bread or cold potatoes/pasta (they become a short chain fatty acid when cooled)) but I think possibly I've had too many off piste days recently hence the HbA1C reading.
Awful lot of carbs in the average UK supermarket banana! Snazzy and I need to be down to about 20g carbs to lose weight - and that is exceeded with a single banana!
The idea with both weight loss and controlling diabetes is to have the carb intake low so your body learns to burn fat - that "boost of energy" myth is what makes a population overweight at best. We don't need anything like the amount of carbs people think, IRO 100g per day at most and the RDA is 130g. The average US diet includes more than double that - and in many cases far more. And mostly poor quality carbs at that with loads of added sugar. The UK diet is probably slightly better in that portion sizes are a bit smaller - but they are growing.
I've just been on holiday and watched people stuff their faces with all sorts of sugar for breakfast from the abundant buffet. We are brought up on the myth that we need a big high carb breakfast yet from what I can see from the research of Tim Spector, Jason Fung and other experts there is no evidence to support that. A myth started by Dr Kellog apparently to promote his cereals. I managed to break the breakfast habit a few years ago but must admit succumbed a bit as I was on holiday, but then found I was hungry again by lunchtime and so you're in a viscious cycle of high and low blood sugars that you respond to. If I don't have breakfast I'm usually not hungry until teatime, though it varies as I am on high Pred and sometimes get hungry and eat something rather than try and push past it. I know from previous discussions on here that what suits me doesn't suit everyone, and also a change takes a bit of getting used to
Hearty breakfasts maybe necessary when people were toiling in the fields all day or find the mines and working it off - but that has long passed!
Same here - although a nice plate of bacon and eggs and nthing else keeps me going far longer than the dreadful carb-based UK breakfast. I almost never eat before about 2 to 3pm - just mugs of tea!
Part of the reason I gave up breakfast was that I couldn't face things like eggs and bacon every day and it is difficult to find low-carb options to traditional highly processed food like toast, cereals etc, so I just stopped having breakfast and found it easy after a few days of adjustment. Also eggs seem to make me bloated and constipated so I only have them occasionally. I'm sure giving up breakfast helped with the weight loss, though as i have my own hybrid diet of low carb, low histamine that also includes time restricted eating (TRE also known as fasting) so I don't know which is doing the trick, or if some combo is. Also interesting, I haven't lost any weight for ages, I'm in some kind of plateau I guess, but I could get into clothes like shorts for my holiday last week that I couldn't fit into last summer, so my body shape must be changing even though it doesn't alwasy show on the scales. I'm the classic lemon on sticks - big fat belly and face but thin arms and legs
I've been trying to keep under 50g of carbs a day but given my current bs readings I don't think that's enough for me at the moment, think I need to aim for 20 or less, more like full keto
😳 ...Good grief! How do I find out the carb intake best for me to lose weight? This is where I'm going wrong
One friend did it by cutting her current level of carbs by 25% for a couple of weeks, then another 25% - and kept cutting the carbs until she started to lose weight, This also had the advantage of not being such an enormous change all at once so was easier to accept and also one of the things some people find with very low carb is that they get a sort of fluey feeling for a while until the body adapts. Everyone is different and some will lose weight by less of a cut in carbs than others,
This website is a good basic explanation that is easy to understand and the pictures make it easy to remember what is higher and lower carb food.
Learn the principles and adapt your cooking style.
This is brilliant! Thanks so much....as I like a piece of toast with egg or bacon I've ordered some almond and coconut flour to attempt making something 'bready' to go with it
I am very lucky to have a diabetic nurse who is knowledgeable, not just about diabetes but seems to know a lot about PMR/GCA.The last time I saw her she went over my blood results which included ESR. She said my doctor had said my 24 ESR was normal p, then looked at me and said “it is high for you, you are in pain aren’t you?” I was very impressed. She is also lovely and has called me amazing for getting my diabetes into remission.
Wow, wish there more like her. And you are amazing to get your diabetes in remission - it takes hard work and determination and willpower and no one can do it for you!
When I'm in pain or fatigued or in some kind of flare up, I can predict pretty accurately what my CRP will be to my rheumie's astonishment. Usually upping the Pred at least temporarily gets things under control and brings inflammation down again. My current rheumatolgist agrees with this solution, yet I think back a few years ago when my CRP was presistently raised and I was very stiff and immobile because I was on a low dose of Pred in accordance with official tapering schedules, no one saw the link. I knew nothing and asssumed the doctors knew what they were doing until I discovered this forum. Although to be fair, like most people I wanted to be off steroids so badly and was so sick of the side-effects that I'd probably have ignored their advice if they had told me to increase, which is what I did when it was finally suggested to me. I remember being at 5 but having severe problems so a young rheumatolgist suggested going back to the very start and back to 15 with a slow taper and I just burst into tears and refused, I couldn't face another 2 years at least of steroids. But as a result I've had 5 years of high-dose steroids now, so I should have listened as she may well have been right
I don't understand why doctors don't give us an information sheet as soon as we are put on steroids for PMR and/or GCA explaining that we need a VERY low carb diet to avoid diabetes and weight gain...and explaining the other odd things that happen (fat face, redistribution of fat to all sorts of odd places , cataracts (wear sunglasses), thinning skin (keep creaming), bruising (use arnica), etc...
Nice thought -but…
Most of them probably don’t know all the niceties (?) of Pred. Many are more used to prescribing Pred for short term use (asthma, COPD etc) not long term.
Who’s is going to write and fund it? Unless it’s written by a patient, it won’t be comprehensive enough.
Pre -covid members used to leave the charity’s information pamphlet in UK GP surgeries-but that only contains minimal info on diagnosis, treatment not the effects of that treatment. But of course that went out the window.
You are right. It part of a syndrome that doctors suffer from: "deafness to patients".
Because they don't know that it can make a difference. And such a sheet doesn't exist. Tim Spector said in either a book or an interview that in medical school they get an hour or so about the role of nutrition - how can that prepare them for working on diet with patients? Diet is difficult to research - mostly observational studies and they are notoriously innaccurate. Can you remember what you ate last week never mind what you ate a few months ago? And it takes a long time to see effects.
And look at the wrong info that is still being disseminated even by the NHS - it takes years to change it. I have seen advice about cutting carbs elsewhere - but there is a real hurdle to clear in the NHS where diabetic nurses were still telling patients they must eat MORE carbs - why on earth would you increase the food group that is the poison in a disease and then use more medication to balance that out. The concept of multiple small meals for dietary control has been thoroughly discredited - it results in an increased calorie intake! But quite recently people said their diabetic nurse was telling them to do that and claimed not to know anything about the Newcastle diet which is now funded by the NHS I believe.
In fact, I think in France they do try but patients don't like being told to cut the baguettes and croissants.
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Absolutely Amen to that! Both rheumys I have had just prescribed pred and sent me on my way! No warnings of the side effects 🙄
Dr Mackie is working on it, along with everything else
Please keep us posted on that ...ive kind of realised I might be in it for the long haul and not just 'free of it within approximately 3 years!' as stated by my 1st rheumy
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