so - - saw my GP about a raised HBA1c which means I am pre-diabetic and her advice about diet is useless as I TRULY could not reduce/exclude anything more, so that leaves 1. genetics, which I cannot change and 2. upping exercise, which is, as you all know, not easy but hey - ho - off I go. AND then theres 3. getting off the preds ASAP!!
When I explained the ups and downs of tapering, she suggested that some of my 'flares' could indicate that I am becoming dependent on the preds because of the 'feel-good' effect that they have as we age, not something i had previously thought about. Certainly things like the hip bursitis I had before and arthritic joints are benefitting. But I still would prefer to be off them, I seem to get every side effect going.
My questions are 1. is about the last bit - is there any truth in the dependency theory??
2. Has anyone tried the 5:2 diet??
Thanks in anticipation - Maggie x
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I was diagnosed type 2 6 years ago and got into remission by changing to a low carb healthy diet and walking. I couldn’t walk far to start but built it up. I walk over 10!000 steps a day. I have 1 piece of low carb bread for breakfast, then I don’t eat until around 6 pm which is usually a salad with cooked chicken, eggs, cheese, salmon. I got used to this 2ay of eating and when I eat something with more carbs my body doesn’t like it. I have a very helpful diabetic nurse who encourages me in a kind manner.
thank you, that sounds like something I could live with. It is very difficult to know which health 'trends' are safe to follow, so much information but rarely with accompanying evidence. I have removed just about all carbs but a friend warned me this could mean my body will just 'suck them up' when I re-introduce them! And most health advice is not to exclude a whole food group. Sounds like you have a great balance. x
" I TRULY could not reduce/exclude anything more,"
What have you excluded?
Only one thing must be reduced - carbs, especially processed carbs and added sugar. You can eat as much as you like - PROVIDING you cut carbs when on pred. Low carb works to both maintain weight AND reduce the risk of developing full-blown steroid induced diabetes which is not the same a TYpe 2. You cannot control the random spikes of release of glucose from the body stores that pred induces via the liver and which raises the Hba1c, but you CAN minimise the contribution to blood sugar levels made by diet,
"she suggested that some of my 'flares' could indicate that I am becoming dependent on the preds because of the 'feel-good' effect that they have as we age,"
What drivel!!!! I have yet to experience any euphoria - except that due to removal of pain! I have been able to get from the 19mg I could not get down from previously because I flared whenever I tried lower, to 5mg without any "withdrawal effect" in terms of euphoria once I was put on tocilizumab which effectively deals with the PMR - and that is after 14 years of trying to reduce pred.
I have tried the 5:2 diet and it did work to some extent - but personally find cutting carbs easier, having lost 35lbs having done that and switching to prednisone after a short time on methyl prednisolone which was horrendous in terms of side effects and the only time I have gained weight with corticosteroids. I had gained weight with untreated PMR and no exercise, it rearranged on prednisolone but I didn't gain any more until switched to methypred. It all went again on prednisone and low carb. My Hba1c never went above 39 either.
You will get off the pred when the PMR is ready and not before - as long as the underlying autoimmune cause of the inflammation is active, you will need pred to manage it. It is like a dripping tap filling a bucket - the pred is the scoop removing at least the same amount as the tap is dripping into it. Too small a scoop and the bucket will fill up.
It isn't a case that the pred cured anything and then you get off the pred asap - the higher doses emptied the bucket. Now you are titrating the dose by tapering it to find the lowest effective dose that manages the inflammation created each morning. If you don't, the inflammation builds up again and you flare. Nothing to do with "feeling good".
We don't say NO carbs - we say LOW carbs, There is a big difference. For some just cutting the processed carbs is enough, SnazzyD and I were less lucky, reduced to salad and above ground veggies! Fruit can pose a problem too. But the unfortunate truth is always that whatever technique you adopt to lose weight that works for you, if you later ditch it and go back to the eating pattern that caused the weight gain, you WILL regain the weight, And if it was eating a lot more carbs that did it - yes, it will look as if the body hoovers up the carbs! It isn't a short term "diet", it is a new way of eating for life.
I actually read a study about another bad aspect of ultraprocessed foods today - they have emulsifiers in them and they increase the risk of cardiovascular disease:
I excluded ultra processed foods a long time ago, pre PMR for many reasons. I have never eaten a lot of carbs either, and only 'good ones'. It is tough going x
Me too - really don't like them, My husband wanted them and nothing I could say would persuade him otherwise! Trouble is - even the good carbs are carbs when it comes to pred!
Absolutely. It is where I struggle a bit with my vegan daughter and grandaughter - nothing wrong with being vegan, but NOT if you use all the "substitute meat products".
You don't need a 'product', when there are fresh veg to choose from....a carrot that is made to look like a steak by adding chemicals never appeals to me personally 😉🤣
I wouldn't eat seitan anyway - edge to edge wheat gluten!!! The wheat is the potential problem, not the gluten. But my daughter is now gluten-free vegan - even more reading of labels!
I do that PMRpro! The optician thinks I'm mad. In years gone by I remember two friends who did the same, and I used to think that it was a bit odd, but I do it myself now and it makes such a difference.
I have tried to have a low carb diet. What worked brilliantly for my husband who was type 2 diabetes was a diet that included complex carbs not refined, and he swears by his morning porridge. On this diet which was whole carbs, veg, fish, chicken, etc and the occasional fruity pud he lost 2 stone and is not diabetic. Alcohol messes with blood sugar levels too. The trick is not to slide back into old ways. For me this does not work as I had colon cancer which resulted in removal of a section of my large intestine plus radio therapy, chemo etc. The result of this is complex(fibrous carbs) causes inflammation. I have put on a lot of weight around my middle and if I am not careful I have now started to get hypos when my sugar levels crash. Bugger. Small meals often I am thinking. I see the consultant tomorrow so I will see what he says. I am on 13mg pred and am always stiff and sore. I think they will suggest leflunomide. Here's hoping.
Interesting - I suspect this proves how different we all are. Mind I will get the old man to test himself after eating porridge. His blood tests have not shown massive spikes. Thank you. X
There is a thread about the ZOE programme using a continuous glucose monitor and some discussion about how individuals respond to supposedly healthy foods.
I think Koalajane mentions how her hypers are in a window a few hours after pred, she avoids eating in that period and it works well. With pred at least, hypos do follow hypers and the stimulation of insulin production - being as there isn't a problem with that as it is steroid-induced diabetes not Type 2.
Being pre.-diabetic doesn’t necessarily mean it will escalate. ..and levels will decrease as you lower the Pred dose, but that cannot be done quickly. Many of us have been in same situation, and come through it.
Your PMR needs what it needs Pred wise - and as PMRpro says you do need to seriously cut carbs -and I’ll add, a more sensible GP… current one isn’t helpful.
It does annoy me when those who have not needed Pred to survive pain, disability etc, think we get some wonderful kick that we are loathe give up. Yes, there is withdrawal but I really don’t think it’s like coming off some upper. It rather feels like the body has adapted to living with the far reaching effects on tissues and a reduction moves the goalposts and it has to adapt again.
On doses under 10mg the issue of slow returning adrenal function comes into play and is nothing to do with addiction. I’d say it gets a bit dodgy if people keep popping up the dose to avoid the necessary feeling tired bit in order to be able to get back to their lifestyle that they want back. Sometimes it is necessary as a very occasional measure but not to keep doing it because the adrenal glands need to be encouraged to work for themselves.
Regards diet, low low carb all the way. Yes, the liver keeps being forced to engineer a glucose spike, but avoiding compounding it with dietary carbs can work wonders. Even on 60/40mg my HbA1c became stable once I started it. Some people need to cut carbs severely and others less so. A food diary can reveal small inputs that rack up quite a count.
When you talk about bumping back up, do you mean for PMR symptoms or low adrenal function? Sometimes it can be difficult to tell especially as low adrenal function can cause fluey aches. One learns through patterns and how quickly it kicks in after a drop. What is the pattern with you?
It took a year to go from 1mg to zero, though I think some of that was psychological. My body noticed 0.5mg drops so so was cutting up pills into quarters. By that time the Rheumatologists has lost interest in the Pred scare stories because it was so low. For me the mere fact of being at zero didn’t suddenly mean everything went back to how it was and I think it took some getting used to the fact that I didn’t feel back to old normal but it didn’t mean that I needed the Pred. It can feel like being at zero is the holy grail. I have had a slow road back to fitness. I still have to watch carbs like a hawk such as I can either have a small desert or a small amount of potato/pasta/rice routinely. I eat bread once a week. I go by my waistline because my blood sugars are no longer checked.
8 months on pred, my Hba1c has stayed the same, at the higher end of the "normal" range. tbh, I could do with losing weight and I am sure it would go down if I could, though the chances of that on pred are slim (pun intended). I'm just happy that my weight has remained stable on pred. If I could increase my exercise levels, I know that would help, but the deathly fatigue got me for the last 3 or 4 months, though I think I might be making some progress there, feeling slightly more energetic the last 2 or 3 weeks.
Those factors aside, I chose to go down the route of a loosely anti inflammatory diet combined with the low GI diet that I was following on the diabetes programme last year. I was pre-diabetic Feb 2022 and by Aug 2022 had got out of the danger zone, but need to keep working on it. I've gone lowish carb, rather than full keto. I practice mindful shopping (I made that up) i.e. the foods that will put temptation in my way or could lead me into over eating don't even go in my shopping trolley. 90-95% of my weekly shop is single ingredient items. In any case, I am also wheat intolerant, a fructose malabsorber and possibly undiagnosed celiac, so that helps.
So, no foods with added sugar, not too many fruits, try to avoid white starchy foods but sometimes I need the energy so a little potato or gluten free bread, once a day, no seed oils and no fried foods, no cured or processed meats. I try to avoid alcohol as it gives me the munchies and it raises blood sugar. I fill up on plenty of vegetables from a varied selection and my go to snack if I am hungry between meals is fat free natural Greek yoghourt. For protein, I have mostly chicken and fish with some red meat, most days beans and pulses or a few nuts in a big salad. I eat a lot of green leafy veg. I try to balance my carb intake against my planned energy expenditure, so I might have them before I exercise and always with veg to slow absorption and avoid blood sugar spikes that can raise Hba1c over time. I haven't banned anything, if I really want to have certain foods, I have them. That psychological trick works for me to beat the sense of deprivation and end result is that I rarely want to eat the things that are not on my positive list.
I won't mince my words over your GP. The rheumatologist said similar to me a few weeks ago, that if I don't come off pred directly, I will get hooked. I swear that some of these doctors have their heads stuck up their own bottoms. Do they really think that we are all getting high as kites on the stuff and can't wait for our next fix? Honestly! I'm still waiting for this steroid feel good factor after 8 months, pred makes me feel crap and it has done right from the start, but it does get rid of most of my pain. She's talking a load of rowlocks regarding getting pred dependent. Of course we are dependent, we are in pain and nothing else works, and the pred knocked out our adrenals, but that happened quite early on in taking it. Thank goodness my GP has a bit more sense and compassion. She said to me, of course you want to come off pred (I really do), and we want you to stop taking it too, but your body might have other ideas and that is what we have to listen to.
I really begin to wonder about some of these medical people. They seem to dream up answers that are nothing to do with real life. Steroids give us a ‘high’, what gibberish.
I did read recently that cinnamon helps reduce blood sugar, that could be gibberish too!
I'm getting to think I've mis-represented my GP. She clearly said dependent on the 'feel good' element... and qualified it as due to the additional relief from existing aches + pains and degenerative changes as we age... sorry if I didn't make that clear. I dont think she was suggesting a 'high' x
My own experience of long term Pred is the reverse of a feel good factor, they make me feel awful but control PMR type stiffness and pain. I have come across this misapprehension from doctors before, it is unhelpful. The last time I felt good from them was the relief from my initial doses 8 years ago. My blood sugars dropped as my dose decreased. I was congratulated for no effort, just the normal taper.
The 5.2 diet is worth trying. I actually felt good on the fasting days. My body liked it. It is hard to maintain in a family I found. I must try again.
I have mentioned this before. I lost 24lbs in a few months. I wasn't too overweight but felt a bit chubby in my face. So, I found this protein drink called Huel which is totally vegan and tried it. It's so nice. I replaced my lunch with Huel and that was it I started losing a bit of weight After a month I stopped eating so much bread and potatoes and then the weight fell off.
My dear Father was very slim and I didn't feel good about myself.
I have so many differing clothes that don't fit me now!
I have been a total vegan for about 15 years and haven't ate any meat or fish for about 40 years. I don't harp on about it either.
Prior to my ankle fusion, which I'm still recovering from, I walked a few miles everyday. Liz and I used to enjoy going to restaurants twice a week but decided one day "No More" paying £50 for a crappy lunch for two with bad service and so-so food. We decided to go Mediterranean and that's how we live now.
We spend our restaurant money on other luxuries in life.
I had some chips this past week and they seemed quite bland.
I'm still on 9 mg of pred and shuffling around with a walking frame but I am determined not to go back to my old ways of eating.
Also I haven't had any flares for a while
When I am able I will rejoin the local Nuffield Health Centre and will tread warm water 'til my ankle works properly again. It's over £60 a month but look what I save on eating at crappy restaurants
I was thinking of that but to be honest I'm OK doing my own thing. The walking in warm water with body exercises and aqua dumbbells served me well last time. I will have words with the "sales team" before I join though. I know they'll offer me swimming lessons but sod that ha ha nuffieldhealth.com/gyms/dev...
David you may be lucky with Nuffield as if you are not already a member they do a 6 month free pain course which gives you free access to all the facilities for absolutely nothing! Check it out at your local one.
Well thank you @S4ndy I'm about to talk to my wife about rejoining. She has Bursitis and likes Pilates plus I think that the aqua exercises would do her good.
The 6 month free pain course sounds good and I'm quite surprised at that! I will get in touch with them. I'll go through their contact on their website so as I can contain any excitement I exude!
I really like this club and was a member when I came back to England. It was lovely as I could sit outside in the sun too.
Plus a bus stops right outside and we could use our bus passes which would save another £20 a day!
I just started on it today. It’s called Nuffield Health Joint Pain Programme. You go twice a week for 22 weeks and get 6 months free membership to use all the other classes and facilities. So far so good…
Like you I was very recently told that I was pre-diabetic and that was down to steroids. My numbers were 41. I have stuck religiously to a fairly strict Keto - sometimes Paleo - diet since diagnosis 3.5 years ago. In the early summer, I started to enjoy one small glass of wine or a G&T every week or fortnight. To counter that I stopped eating my once a week banana treat. So what is going on? I feel as though I can’t drop anything else out of my diet. I exercise at the gym at least once a week (jog, spinning, weights), dog walk twice a day with a long walk at weekends… there’s no diabetes in my family… I’m at a loss for what to do next. The odd glass of wine has now had to go and I have cut my nut consumption down. I already eat very cleanly with no fruit, processed stuff or any “under the ground” veg or any legumes. I don’t even eat tomatoes or any nightshades. I’m at 7mg decreasing by 0.25mg every 3-4 weeks, so I’m hoping that things will improve as I drop lower.
You could try joining the ZOE research with a continous glucose monitor to see what your pattern is. It may be something as simple as when you eat. Pro provided a link above. Also I believe continous glucose monitors are available to buy now. Info on diabetes UK site. Knowledge might allow you to have more treats. There are some hacks that the glucose goddess suggests: eat salad before meal, exercise within 20 mins of a meal. Can't remember third one.
It is the one I was trying to think of, IdasMum, thanks. It should always be diluted (powerful stuff can really hurt the tum and teeth) and should be ACV with 'the mother'.
I signed up for the fast 500, website which includes 5:2 and several other combinations. I successfully lost my 2 stone pred weight gain, over 6 months. It was not easy and took some planning, but was worth it.
Sadly after two and a half years on steroids for PMR, I was diagnosed last March with Adrenal Insuffiency - and I am now dependent on steroids to put ‘petrol in my engine’ as the endocrinologist said. Also because I am severely asthmatic and have had to take high doses of steroids for 5 days from time to time. I too have just been told I am pre diabetic - and have been referred to the naughty room where I will be told to change my diet and exercise more. I never eat carbs and walk my dog for 2 hours a day. Steroids can cause diabetes - insulin and the liver - and if only I could get an appointment at the endocrinology dept at Ipswich Hospital, I might get some advice but there is at least 9 month waiting list. My GPS know no nothing about Adrenal Insuffiency and don’t want to learn.. oh well!
PMR inflammation also raises your blood glucose levels. It put me into the pre-diabetic range but after starting pred it dropped - not quite to pre-PMR levels but out of the pre-diabetic range.
Theses days I eat my veg or salad first as this is supposed to reduce spikes. Cut out snacks between meals (unless it’s a handful of nuts or seeds) and then go for a walk. My treat is dark chocolate which my dentist informs me is second best to fluoride in toothpaste. I had to google it afterwards to believe it.
I’m in the same boat, 67 with a family history of diabetes, slightly overweight and taking 5mg of Prednisolone, have been taking it for years. I was diagnosed with pre diabetes in December last year after a bout of Covid and have been sent on a NHS diabetes training course.
The course is mainly about motivation and teaching people about good food choices but due to the wide range of people who attend the dietary advice is rather vague. I have been trying to stick to a low carb diet but have found I’m getting very tired and feeling a lot worse than I ever did before. I’ve tested my blood sugar levels occasionally and they haven’t changed a bit.
I have lost some weight but am limited to the amount of exercise I can do due to an ankle injury. Anything over 5,000 steps and I’m in trouble.
I’ll continue with the training programme and the low carb diet but I’m not keen on tapering my Pred as I think it’s helping with more than just my PMR and this hasn’t been suggested yet. I think controlling my diet is the only thing I can do at this stage.
If this started up after Covid - I bet it is DUE to Covid. And I wouldn't be surprised if the other stuff is also a left-over of Covid. It is a vile virus ...
So during my 3 years of Prednisone for PMR I developed everything. I became pre-diabetic and then diabetic which meant I had to go on Metformin. I developed severe osteoporosis which caused me to have multiple broken bones in my back so I started Prolia and then when I was tapered all the way off of prednisone I realized I had developed adrenal insufficiency. So I'm back on the steroids for the rest of my life. But I haven't had a broken bone since 2019 and my diabetes is in check and I no longer have to take medicine for it. At the age of 62 I have stopped all my vices from smoking cigarettes to drinking alcohol and coffee but I cannot seem to stop sugar. However I was still able to lose 75 lb and that's when my diabetes cleared out. I did not lose the weight easily. Actually it was because I developed stomach problems which made it very difficult to eat. Not a way I would recommend dieting.
Hi, I was in the same situation with pre diabetes and felt the same as you about not being able to reduce my carbs any further. I’m now down to 6.5 mg pred and was told last week when Hba1c checked that I am no longer pre diabetic 😃All I can put it down to is the reduction in pred although a lot of people rubbish steroid induced diabetes or pre diabetes.
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After a month I stopped eating so much bread and potatoes and then the weight fell off. 
Steroids and itching 
GCA and steroid withdrawal
GCA and steroid reduction 
Steroid-induced diabetes
Nearly off steroids...
