Hi, I’m on pred for PMR since April this year, presently on 13mg, and thanks to this forum I have learnt a lot about managing the condition and what questions to ask. Had posted before about the importance of asking for numbers re CRP & ESR blood tests rather than the doctor’s comment as ‘normal’ can encompass a very wide range. Didn’t follow my own advice though when asking for Hba1c results. Was told ‘normal’ but since have phoned back again and it was 41 which is not far from pre-diabetes range of 42 upwards. When I spoke to my GP saying I would like to have been told this as it’s not a great result she just said it’s not unusual!! I replied that now I know, I can act accordingly whereas I had been lulled into a false sense of security. What is it about being so secretive with results! She actually said that if numbers were given out, people would be querying what they mean. So why not say what they mean then! Aargh!!!
In other news, my dexa scan today showed my bones were the same as 2 years ago, -2.2 hip and spine, still osteopaenic rather than osteoporotic! I fully expected them to have crossed the line of -2.5 as the nurse more or less told me to expect that, at my previous scan, based on the percentage decreases I had been experiencing. Also I expected the pred would have drained them even further. Since April, have discovered a Solgar Calcium Citrate + magnesium supplement which doesn’t cause me extreme constipation like the Adcal D3 which I had given up on, quite the opposite in fact. Also taking Vit K2 with my vit D after reading advice on this forum. Could it be that this has made a difference in a relatively short time? Sorry this is such a long post but maybe it will be helpful to someone.
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I would be surprised if it had made the difference in such a short time - changes in bone density take time, either way. But who knows.
I know - they still think we are all total ignoramuses! It isn't difficult to get info - if they tell you in the first place! All she had to do was tell you the baseline Hba1c, explain what it means and then tell you it had gone up. And what to do: cut carbs!
Mind you, I have a friend who has been diagnosed with Type 2 and her Hba1c is very high, So the GP tells her it is all about calories and he doesn't expect her Hba1c to go down any time soon! So her Saturday breakfast was a couple of rolls and jam ...
....my Rheumatologist wanted a bone scan so my GP ordered one at my local hospital. My GP’’s nurse called and said everything was fine and continue taking two Calcium daily. My Rheumatologist looked at the scan ad his nurse called and said I need to take a Bone Med, once weekly for the rest of my life...I had weak bones. .
Whatever you do taking a bone med (if you mean bisphosphonates) you should NOT be taking them for the rest of your life. They now recommend a holiday after 3 years, at most 5 years, to reduce the risk of the more unpleansant long term adverse effects such as avasular necrosis and the development of bone with microcracks which can fracture spontaneously. They were brilliantly marketed at the stage before the post marketing reporting revealed these problems. They aren't the miracle drugs it was promised. I think I would have gone back to the GP for the real results and and some discussion.
Thank you...Inwill speak with my GP. I do the two calcium every day.
It does drive you mad when they say....nothing to worry about or normal. I have started asking for print outs and copies of communications between rheumy and Dr.
Re hba1c. You are so right you can make some adjustments now that will prevent it going higher (hopefully). I think though they have this view of hba1c, when you are on steroids, because there is an expectation it will go up. If you lower your carbs significantly you could probably have a better hba1c than many people without PMR etc that ar 50s upwards.
That's good news re dexa. You never know you might be back tracking that too. If you cross-ref high calcium.with low carbs.
Oh believe me I have. The last time I was threatened with removing me from their practice for calling the receptionists "not qualified to read a book less a report of results". They almost cringe when they see me come through the door!!
I have a voice that goes louder as I get more annoyed! Plus I get more and more sarcastic. Worked well in my career and even better when in the nice quiet gp surgery. My favourite is when the receptionist insists on asking for the details of why I need to see the doctor sometime in the next 6 weeks!! I usually start with a loud conversation about bowel movements and I get an appt quite quickly!!
That's why I ask for printout. I don't even ask the Dr now if anything out of whack. Mind you for once I will get feed back for a sample....they have actually booked an appointment for a week in Friday. Usually they haven't contacted me until, for example, my hba1c was 114. And it was me that blagged the blood test in the first place as I knew it was high from my meter but couldn't convince them to give me insulin. I think part of the confusion there is because, like your surgery, one of the receptionists/admin staff has the job if flagging things up. Receptionists are the gatekeepers of course.
I have a new favourite gp now as well as the one that diagnosed pmr. The latest to hit the "dont use unless dying" was the one who said pred doesnt cause damage to bones and then promptly told me it did cause damage and I had to take AA.
Oh dear. It really doesn't give you much confidence. Apart from antibiotics etc it's probably about the most prescribed drug (??) And you would think a breadth if not depth of knowledge!
Karma should dictate that all of our really bad GPs, Specialists , physios and Nurses should have to be treated and cared for by us when they get sick in the future.
Perhaps if this rule was brought into Law they may start to double check their facts and figures before handing out advice , inappropriate drugs or care plans willy nilly.
I'm imagining a Dolly Parton in the Film , '9to5' scenario now between me and my least favoured GP, it is most satisfying 😋😂😂
Could well be. Although I find asking the doctor why the receptionist gave me my results before he has seen them doesnt usually get me a decent answer!!
Pretty sure there are results a GP has never seen , until I ask about them in an appointment , hence the fact that they had to retest me for a UTI twice because of alleged corrupt samples last year without them phoning me to bring in new samples , now I'm grateful that I can collect the results at reception , it means I can check them and ring back and ask if the GP is going to deal with my abnormal results .
Thanks poopadoop, that cross referencing idea is really useful. Lots of calcium high foods like cheese etc are low carb. Will study your links and make notes 🙂
Thanks for the tip on the supplement type , as someone who is a long term constipation sufferer because of my other health issues , it nice to hear there may be something I could use as an alternative to reduce the effect that my drugs/ supplements have on that one of my symptoms.
It's hard to get the food / water / drugs balance right everyday with that bowel issue , so any tips are useful.
Hope it helps. I find it can lead to being slightly crampy after meals occasionally but for me it works and that is preferable to the alternative! It may be that taking calcium citrate separately to the magnesium citrate is a good idea. That way you can find out whether taking less of the magnesium might eliminate the slight cramps. I’m going to try this. I researched it and apparently calcium citrate is more easily absorbed than carbonate anyway.
I have tried taking them separately and that didn't make any difference , and I make sure I take them with enough time between them and the other drugs like Pred that they contraindicate with. Just hoping a different brand might be the answer.
I get less cramps in general using Magnesium .
I also take one capsule of pure turmeric ( no black pepper ) a day to help with my IBS and Constipation symptoms , and know this works well for me .
The bottle says two but that can cause your bowels to cramp and be too loose instead.
You can't take it if you are on a PPI though ( and some other drugs ) but if you aren't on other drugs that are effected by turmeric it might help you too.
I’m taking a PPI due to hiatus hernia and reflux, so turmeric is out. Maybe it would be worth you trying the solgar brand then. Assume it’s the citrate form of calcium you have tried? I know magnesium is recommended for cramps in legs, toes etc but I believe it has a laxative effect also.
I found I had more constipation and cramps on a short spell on PPIs after an A and E admittance than I did prior to it.
I have Sicca Syndrome too and the PPI wasn't good for those symptoms either.
I have Buscopan for the stomach cramps and IBS , that also reduces the constipation and muscle spasms, don't know if you are able to take that with a hiatus hernia though.
Not happy about having to take PPI for more than one reason but alternatives like Ranitidine don’t work for me and I have developed oesophagitis. My constipation probkems pre-date PPIs though. I have tried Buscopan in the past.
Yes , just as Poops says it's the drug they hand out to reduce the possible stomach side effects of taking steroids , or give to people whom already have stomach acid problems and gastric reflux to reduce stomach acid production.
Most usual suspects are , Omeprazole , Ranitidine and Lansoprazole.
Although many people do need them , they do hand them out too readily , especially to patients who have had no previous issues with their stomach or taking medications, without giving people the advice to help reduce these symptoms themselves when you go onto drugs like steroids.
They do very much the same with Statins and AA for Bone Health.
But , many people find certain types of their side effects are made worse by taking them but don't realise they could request ( politely demand ) coated tablets instead and use yoghurt with their medications , choose appropriate times to take medications , and make some diet changes that would /could have the same effect.
And people like me who dont have any issues with pred irritating my stomach and so refuse to take them. I personally have been lucky but it would quite happily take them if I developed any stomach problems.
Yes , if they worked , and I needed them , I would take them ( or an alternative ) but I do prefer to get the right advice and options to do things without the
" precautionary" medications first , as they usually increase my symptoms from other issues.
PPIs are not great when you have dry eye, dry mouth , or certain bowel issues as I found to my dismay. You definitely need to increase your fluids when you are on them as they have a dehydrating effect on most people.
I certainly wouldn't touch AA without a scan , and then if the result wasn't severe the option to try natural diet and exercise changes first.
But that's what works for me , everybody has to do what's right for them and their symptoms at the time , they just need to be offered the options first so they know that a pill isn't always what you need.
I was on them for 17yrs due to being prescribed for the 75mg of aspirin they automatically filed out to people with diabetes when I was diagnosed. Last year, they suddenly remembered the protocol had changed and aspirin no longer req'd. So dumped ppi, after tapering using ranitidine. Still some reflux but fortunately my bone density doesn't seem to be effected.
You mean during the so called yearly review by them and the one at the pharmacy. The pharmacist requested I had enteric coated aspirin years ago to dump ppi but was refused.
😂😂😂😂 Yes , they just did my OHs last week and instantly tried to put him back on Statins without waiting for his Cholesterol test again!!!!
He's got the prescription and sat there today saying perhaps I should start them again , I just looked at him and said seriously , do you not take any notice of what you read over my shoulder on this forum!
Thank you very helpful. Feel the same about GP and print outs. Mine looked shocked recently when I asked for a copy of dexa scan results. Even asked me why I wanted it. Think it a power thing with them. Ps my second attempt at this post, first one disappeared
Wow, thanks Nuff1, that’s interesting! I wonder if there’s any way of telling for those of us on steroid medication then. I don’t think I ever even had an Hba1c test before steroids to compare. Still worth watching diet though, as steroids can precipitate diabetes.
It doesn't matter WHY the Hba1c is raised - it is raised because the blood glucose level is higher at times. Then the sensible thing is to try to bring it down by cutting the carbs you can control - there is nothing you can do to prevent the random spikes of glucose being released by the liver due to pred. But you CAN do something to lower the overall amount of sugar that is what is doing damage to blood vessels.
Of course hba1c is a suitable tool for the diagnosis of steroid induced diabetes, and if left long enough for insulin resistance to develop type2 diabetes. . An hba1c measures the 3 month picture....if your numbers are in the diabetes range then it is important you get them down...steroids or no steroids. By reducing blood glucose levels asap you reduce the chance of type 2.
Thanks PMRpro & Poopadoop, I understand action needs to be taken. And your friend’s rolls with jam for breakfast sounded so attractive too! I admit I still have coffee with toast and jam and look forward to it every morning - something to get out of bed for when I’m feeling a bit low. Have changed to wholemeal and one slice instead of two. Maybe I could just rule out most carbs for the rest of the day and keep my morning saviour ☕️
That's what you do. You try and have more complex carbs. Wholewheat bread with seeds, butter and a bit of jam will be your use of 10 to 15 carbs. Then work around that. Low carbing has to be done in a way that doesn't make you miserable and a way that you can maintain. I keep bread in the freezer and toast as I need. Perhaps once you are in the swing you can have a boiled egg or scrambled egg with fried mushrooms. Or yoghurt with soft fruits like blueberries.
I am a bit weird with breakfast too. I prefer cold toast with butter and bitter marmalade...only have it once in a while. Had muesli with extra nuts for a while but dodgy with dairy so trying lactose free!
I went cold turkey with the carbs. It probably helped that my sweet tooth was not a strong one - tended to prefer savoury to sweet - but when I started pred and decided to cut the carbs because of increased blood sugar I was actually shocked at how much wheat I'd been consuming. So I ditched the cereal at breakfast and for bedtime snack. Gone were the occasional lunchtime sandwiches. No more pasta or pizza for supper, only a small helping of rice. My breakfast became an orange, 1/3 cup pumpkin seeds (high iron content) and two fried (sorry, yes fried) eggs and a mug of tea. I have not once missed the cereal and feel the high protein breakfast gives me a much better start to my day. My late evening snack, if I even remember to have one now, is usually a handful of nuts or some yoghurt. I think I'd have found it harder if I'd kept one of the wheat meals and promised myself I'd be good the rest of the day. Nowadays I do eat wheat, but very little. No sandwiches, no cereal, still no pasta unless sometimes when eating out, pizza very rarely, usually just a scone or a cookie and certainly not every day. Because I'm quite thin I never gave up root vegetables, which is also recommended when people are cutting carbs. My blood sugar went down gradually and without hiccups and has been normal for several years.
Be healthy but don't lose the odd treats that make you happy.
When you have a Chronic Illness like PMR there are so many restrictions that are out of your control as it is. You have to think about your Mental Health and Wellbeing as well.
Eating should be a Pleasure not a Chore.
It's totally possible to create a diet for life rather than just a diet that helps your illness or helps you lose weight by creating a healthy balance between the foods you like and foods that you should eat.
I'm always saying let them eat Kale, with the occasional piece of cake😋😘😘
GREAT POST. smart and definitely helpful! So happy for you with the dexa scan!! That is super. the one good thing here, at least with my health care in the US is that we get all the test results online. Our entire report. even doctors notes if you look hard enough! And often I get the test results before the doctor sees them and can email him (I have a male doc) and say WHAT IS THAT???? hahaha..
I dropped my HBA1C quite a lot by reducing carbs over the previous three months - but not by deleting them completely or being 'perfect' - I do like a piece of toast with our organic home made mulberry and crabapple jam (and butter) sometimes or life would be rather dull (LOL !!)
Thanks - we grow our own organic fruit (ie no pesticides/herbicides) and make lowish sugar jams and compotes - apricot, peach, citrus and mulberry but my favourite is a black plum with star anise and it IS 'to die for' - of course too much of it is not OK but some is fine I think as it has lots of antioxidants and great nutrients as well. I think it is better to think 'lifestyle' than 'diet' as impossible for most of us to do 'without' forever - but as I heard someone say recently we can't have 'the occasional muffin EVERYDAY' (LOL) !!
You are very fortunate - what a lovely array of fruit trees! It would be a shame not to use them. Agreed we don’t need to add to our sufferings by being too rigid.
I’ve signed up to Patient Access so can see all my results online and am able to speak to my GP armed with the comparisons to previous blood tests. Having said that they don’t give me access to DEXA or any X-ray results but when I asked him for my T scores it wasn’t a problem but you do need to be assertive and make sure he/she realises you want to take some responsibility to manage your health.
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