Hi, I started on prednisolone 20mgs on 26th January this year for 4 weeks, tapering 1mg every two weeks, currently on 16mgs (10 mgs am, 6mgs pm). HbA1c last August was 5.5% , result last week was 6% (42.0 mol/mol). My diet has been much the same throughout although I’ve been trying to reduce carbs further. This worries me a lot and I have several queries, I’d be so grateful for any help/advice. My questions are: Is this a big/fast increase for being on Pred for 10weeks? Is it likely to just continue to rise the whole time I’m on Pred? How much influence does diet and lifestyle have in the scheme of things? And how likely is it to resolve once I’m off prednisolone? I generally eat pretty healthily, following a Mediterranean type diet although I do love wholemeal sourdough bread , have maybe 3-4 slices a week. Also have a reasonable amount of beans/pulses a few time a week. Thanks in advance.
Questions about rise in HbA1c: Hi, I started on... - PMRGCAuk
Questions about rise in HbA1c
Hello, the HbA1c test takes the average glucose level over 3 months which includes all of your Pred taking. Your increase is not surprising because Pred forces the liver to release its glucagon stores which turn into glucose. This can put up your blood glucose level without even trying before you eat a thing. Many of us have to severely cut down on carbs, even so -called healthy carbs, which really make a difference. A food diary can be handy if you record everything that passes your lips because one can quietly clock up a higher carb load than one realises. It does get better with dose reduction but don’t wait for the revolution and start now. This is because for some the pancreas does become over used and actual diabetes can develop or the body becomes insulin resistant.
I had to have almost no carbs for a long time but I did start on 60mg so was up on higher doses for longer. I did find I had to watch carbs like a hawk throughout and after stopping Pred.
Thanks for this, yes I realise that the whole period of taking pred was covered in that result and that is likely the cause, as there haven’t really been any other changes. Its just whether there is an inexorable climb while on steroids or if it is actually possible to put the brakes on! So were you effectively following a keto diet? Were you having plenty of veggies or was that not possible either with such a low carb intake? I’ve used Nutracheck for years so I do keep a close eye on my intake, I just feel so fed up because I’d finally got my diet just how I wanted, and now having to start excluding more is such a pain! My GP is reluctant to do tests (she wanted to wait for 6 months before doing an HbA1c and won’t do a dexa even though I don’t want to take Alendronic Acid - getting dreadful cramps - which have all gone since I started 3 weeks off it). More discussion and negotiation….
One can put the brakes on with diet. I had to be practically keto but not everybody does. I guess watch the weight in the absence of a blood test. I cut out all bread, potato, rice, pasta, flours, maize. I stuffed my face as long as it was veg or protein. Pulses upset me so I ate meat and couldn’t tolerate much dairy before GCA. I didn’t stint on fats. I limited other root veg and fruit but berries were better. I had two small glasses on wine a week and two squares of high cocoa choc for desert. Yes, it drove me nuts watching the family eat what they wanted and I love my food. My other issue was fluid retention so I had to practically cut out all salt until my dose was lower. My diet was tragic but needs must. By the time I got to no Pred it didn’t occur to me to put carbs on my plate but sometimes I had chips if I wanted and the odd bag of crisps.
I think it unfair of your doctor to refuse to check your Hba1C. I refused AA until I had a DEXA scan. It turned out I didn’t need it and it did show me that I had lost most of the bone density up to the end of my Pred before Pred started. Had it been done after, it would have looked like it was the Pred that did it. Some people get it done privately and I believe it is one of the cheaper scans to pay for.
I eat lots of dairy - Greek yogurt, various cheeses although I do restrict that as it’s so easy to overdo! All full fat of course…you must have lots of willpower, I do find it difficult to omit food that I love…trouble is I could do a totally strict keto diet and not know if it was benefiting me for 6 months unless I can persuade her! I thought about using a glucometer but that just gives you snapshots and not really that helpful. I guess I’ll just have to watch my weight and hope it’s doing the trick. I’m considering having a private dexa although 3 months in there would be no knowing whether it was the pred or exisiting problems…
Can you see a different GP in the practice?
Yes I can choose to see whoever I want although as for everyone, it’s a long wait for an appointment. I’m a bit wary though because generally she’s very good, and is totally ok with me managing my tapering as I wish. I think she’s just being really careful re finances, and only doing what she thinks is absolutely necessary. I’ll see what she says the next time I see her as my 3 weeks off AA have stopped all my cramps and I’m very keen to stop taking it for good. But I really need to know if I already have osteoporosis etc
I kept having the AA “fight” with my doc as I was osteopenic. I got so tired of it I told him to send in the prescription then I never took it. He knew j wasn’t taking it, but felt better that he’d ticked the box of what’s “recommended”, and I was happy to stop fighting him. Am off Pred now (on Actemra) and my Dex scan is at baseline.
It’s all very well for them when they aren’t suffering the side effects! I was having horrible cramps in weird places several times a day which have completely stopped now I’m not taking it for 3 weeks as a trial. I’m sure it was the AA, it’s down as a known side effect. How long were you on Pred for and did you have any problems with the tapering?
What gets me is when something is listed as a know adverse effect and the doctor gets all iffy and denies it!!!
I was on Pred for 7 years when I started on Actemra. It took me a year to taper down to 3-4mg from 20mg (have GCA too) then another full year to taper off the last couple mg.
I approach my health with the attitude that it’s a partnership with my docs. If I chose not to undergo a treatment or medication that’s my choice. It is also my responsibility to learn as much as I can about the condition or treatment so my choices are informed.
I had already ‘practiced’ with dietary disappointment due to having to go gluten free years ago and having watch my family chomp into crisp yet fluffy baguettes and decent pasta!
A doctor said to me that there isn’t an appreciable effect on the bones for 3 months. I lost 10% over 12 years due to surgical menopause and I was found to have very low vitamin D too. I lost a bit over 3% over 3.5 years on Pred for GCA.
I think a dexascan is about £120 so not too bad, that’s interesting about Pred not affecting bone density for 3 months, my rheumy said it started in the first week! And I can’t find anywhere close by that does them either. Still I think I’ll get a private one if I can’t persuades my GP, I’d like to know - I usually follow medical advice so like to have a good reason not too!
In the case of a DEXA scan you are not going against treatment by having one yourself which is a whole different kettle of fish to wanting more clarity and frankly your right to do so.
Perhaps the doctor meant that loss isn’t enough to be picked up on the scan for 3 months.
No it was the HbA1c she said after 6 months, fortunately after that I saw the practice nurse for something else and when I said I was concerned about glucose levels she just did it then. The dexa my GP didn’t want to do for a year. I don’t mind paying if it means I have better info about if I need the Alendronic Acid. When I said about medical advice I was meaning the advice to take that! Sorry everything gets a bit muddled up in these posts!
It probably does start from day 1 and it is said that it happens most in the first 3 months - not sure where the figures come from though. I'm also not sure whether it can be seen in 3 months with pred - the NORMAL rate of attrition is so slow that a dexascan can't show meanigful changes in less than 2 years. They aren't absolute values either - there are variables, starting with the machine used, You can't compare the results from different machines and operators. The real point is that you need a baseline - so it is very wrong to refuse a scan at this stage. Or any stage if it comes to that - AA is often pressed on to us as essential when it may not be needed at that point. I was handed it, luckily I had a dexascan within 3 months which showed I didn't need AA then - nor did any subsequent scan, My bone density is still in the osteopeneic range, it hasn't changed much in 15 years on pred. My rheumy also does regular spinal x-rays to be sure the back pain isn't due to a fracture. The most recent showed some compression of one vertebra which might be a fracture and that made the bisphosphonate question come up again. But after 15 years of pred ...
Right, I didn’t realise subsequent ones should be done on the same machine, makes it all a bit pointless unless you’re lucky enough to go back to the same one every time - and how do you know?? But good to know that progression is slow, I think at the moment I’m still a bit gobsmacked by how much I need to find out in order to be informed for medical appointments..
So if your back is a compression fracture can they treat it in any way?
Sorry my post doesn’t make much sense - I mean I feel I have to do everything in a rush in case there are dire consequences! It’s nice to know some things happen more slowly..
sorry post below was meant for you PMRpro, still trying to get my head around this site!
All it means is they aren't directly comparable, they can't say "you have lost 3% bone density since the last one". But they will show the trend of where you are overall - osteoporitic, very osteopeneic, slightly osteopeneic, "normal" and whether you need to be concerned about being treated. Sheer practicality means it is unlikely you get the same machine or operator every time - they wear out too, people move, staff move around both on rotas and job.
I have had an infusion of zolendronic acid - the plan is 3 at yearly intervals, The jury is out on whether I will have another though as it didn't really help the atrial fibrillation and I will discuss that with the cardiologist next week. I have no pain due to the possible fracture - my back pain was there without the evidence of the compression and is mostly muscular, sacroiliac inflammation and arthritis in the spine and pelvis.
I've been doing the same as Snazzy D and eat a keto diet most of the time - I really enjoy my two pieces of dark chocolate but I gave them up for Lent - pleased to have them back now. I also gave up wine and am not so keen to have that again - clearly I am a chocolate lover - at least 85% dark. My Hba1C showed 42 at one point but once I realised and researched I got it down to 36 and am determined to keep it there. Diet and lifestyle plays a huge part for me and having watched Tim Noakes recent interview (Noakes Foundation in S Africa) I have decided to go carnivore for a while and see how that goes. This is worth watching if you have the time - facebook.com/thenoakesfound.... Hope the link works.
How long did it take for your level to come down? It’s nice to know it can be done - were you tapering at that point? I’ll have a look at that link, thank you
It didn't take long at all - I think it was about 8 weeks. I was tapering but can't remember what dose I was at now. Altogether I lost about a stone and am now hoping to lose a bit more - another half stone would do. I feel it is worth trying carnivore again (I only tried it for a week or so as it felt 'wrong' not to eat vegetables). This time I will stay with it and have the absolute minimum of veg if any. I would love to get over PMR - wouldn't we all?
8 weeks, not too bad really. I think I’ll give the carnivore diet a miss at the moment at least, heaven knows what would happen to my bowels if I stopped all veg! It would be amazing to be free of PMR, I think I’m only at the beginning though really…
I agree - try low carb/keto first, preferably without dairy and then, if you want to, transition to carnivore. I have to say that I have suffered with 'IBS=C' all my life, since I was born and have never found a solution. When I briefly tried carnivore I was amazed that my digestive system began to work for the first time in a way that seemed 'normal.' Hence my reason for trying it again and for longer.
Your Hba1c may have risen but it is still at a very acceptable level and now you are getting to a lower dose of pred it shouldn't rise as fast if it rises at all. Diabetics are told to aim for 48mmol/mol and the target in pre-diabetics is 42.
As Snazzy has said, it is very easy to include more carbs than you think in a healthy diet - fruit can be a major culprit. Timing of eating the carbs is also critical for some - Koalajane found a time window where she had to stop eating carbs to avoid the spikes. And for others, going for a walk or other exercise immediately after eating stopped the rise in BS level.
Yes I’ve seen this about exercise after a meal, also eating veggies/fibre first to slow absorption, plus vinegar seems to help flatten a glucose spike - all extra things to try…your post is quite reassuring - of all things I would hate to become diabetic in the long term, so thank you 🙂 Do you think it’s worth updating my glucometer (had it for work) and maybe doing a couple of separate days before and after meals..I don’t want to get obsessive and not sure it would help in the long run…
Difficult to say - random BS levels are unreliable when you are on pred as you don't know when your reaction period is and spikes occur. It does usually seem to be within a few hours of taking the pred. I suppose you could identify if that is when your BS is shooting up and whether eating different foods improves it.
I tested mine every hour at first to see when my blood sugars spiked from the pred. I discovered it was about 4 hours after taking the pred and lasted for about 5 hours. So I eat breakfast and then the next time I eat is around 6pm when I have my evening meal. My sugars don’t go quite so high now I am down to 4mg of pred. I also walk after my main meal in the evening which I am sure helps my morning fasting reading. It is quite difficult working it all out! I have been in diabetic remission for over 6 years and I still test to be sure I am on the straight and narrow!
Yes I think if I did test I would do it like that, a couple of days of intensive testing to get a better picture of the ups and downs, but it must have still been hard to know if it was a steroid or food spike. Very useful to know though. I also have just two meals a day but I omit breakfast, fast for about 16 hours overnight and have done for over 10 years although that probably means I get a double spike! I think for the time being I’m going to just try and cut down carbs as much as possible and exercise after meals (apparently even just sitting jiggling your legs about can reduce spikes by about 30%). You’ve done brilliantly to stay in remission for so long!
Hi Tribie, welcome to the forum. This is the place to be if you are concerned about any issues with your PMR. I was diagnosed with type 2 diabetes 3 years prior to having PMR. Initially I controlled my diabetes with diet but since having PMR my Hba1c has crept up and I’m now on oral medication and more recently insulin injections. I do try to follow a low carb diet but I’m constantly hungry more so since starting insulin. Re bone health. My Rheumatologist refused to let me have a DEXA scan when I was diagnosed with PMR in August 2018. I took Alendronic acid for 12 months and had bad side effects. I’ve just paid to have my third annual DEXA type scan. It’s called REMS. This is through a private company called Osteoscanuk.com. They have mobile units across the country. I’ve been fortunate to see the same practitioner (a former orthopaedic surgeon) using the same machine. I have Osteopenia and have been told that I must try to increase my weight bearing exercise to improve my bone density. Not easy as I have arthritis all over my body. I am the same age as you. I wish you well, Tiggy🌸
Thanks for this Tiggy, sorry for delay in response, had a busy day yesterday! I’ve found this forum invaluable for advice and support, it all seems overwhelming when first diagnosed and there’s so many things to find out about. I too am hungry all the time - my appetite has really increased since starting Pred and I have a sweet tooth so I’m finding it challenging to say the least. Re the dexascan, if my GP still refuses I will get a private one I think, she said I could have one in a year but even if she referred me for one now I think there’s a long waiting list in my area. I’ll look up Osteoscan and see if there’s one close to me. I am lucky enough to be pain free, am pretty active and do resistance training and pilates 3 times weekly (have been for about 12 years now) but who knows what’s going on in my bones? And if my bone density is ok I’d feel happier refusing AA. My mother was crippled with arthritis so I know how awful it is, are you able to go for short walks - even that would help I think…
I can manage short walks and now that the weather is improving I’m going to try and get out for a short walk each day. I’m not the type of person to sit around all day and some days I rack up 8 -9,000 steps on my Fitbit without leaving my house. I’ve just been outside in my garden and everything is just starting to take off which is lovely but means a lot more work! 🌸🌷🌼
Tapering 
Synacthen Test Results and Endocrinologist’s Advice.
Too Soon??
Is it end of summer blues, low mood about having a chronic disease or a decline in my health and is it wise to taper?
