hi everyone I was diagnosed with PMR in February this year And despite being a diabetic with high bp was put on Prednisolone and alendronic acid - I was managing my diabetes with food prior to this but have now got out of control readings with ketones present in every reading except my blood fasting morning one - I have blurred vision- severe cramping in bottom calf’s which starts like an electric shock and despite being given an extra bp pill my readings are 179/112 -153/102 between those all of the time -The cramping is so bad it locks the legs in odd shapes and happened in tescos where I was floored when reaching into a freezer and taken to the cafe - I am asking myself is it worth going blind over is it worth the unstable bp and bg has anyone completed the journey successfully I feel like they threw me a leaflet and pills and I’m left to get on with it - I’m sorry it’s a long post I am also facing a tribunal for lwc I wasn’t diagnosed at assessment time it’s a year since my assessment still no date and to top it all last Saturday I was rushed to a and e with appendicitis was this the immuno suppressant too ? Any advice on wether to stay on them or quit it ? Many thanks
Prednisolone and diabetes / high bp worried sick ... - PMRGCAuk
Prednisolone and diabetes / high bp worried sick about all the side effects
Hello and welcome! Lots to unpack here. You’ve got enough to put up your bp even without PMR from the sounds of it. First some questions to fill in some gaps 🙂 as the more info in the bio the better.
What were your symptoms on diagnosis? What dose were you started on and what are you on now and is it keeping your PMR pain at bay?
What kind of diet are you on, especially regards carbohydrates? Pred usually means a very very low carb diet is needed not just a general healthy one.
When does the blurred vision occur? Both eyes, the whole picture? Pred can affect the ability to change focus for a bit which does go with the dose reduction. However, it needs a bit of a check in case it is not the Pred.
What kind of bp meds are you on and did the cramps start after the extra pill?
There will be more replies so sit tight.
hi snazzyD thanks for the reply I’ve been feeling rather lost with it all so it’s much appreciated - I was stable on Ramapril 10mg for 4 years and was given amlodapine 5mg as an extra following an initial 30mg Prednisolone (then 20 then 15 then12.5 now in 10 f for four weeks )- my initial symptoms was neck stiffness both shoulders elbows giving out carpel tunnel both wrists trigger finger both middle fingers of both hand sticking in a downward position for long periods of time , knees giving out hip pain on left I was diagnosed with ra at same time as Pmr I am already on a fairly low carb diet with the diabetes but since the pred I get ketones flashing at every meal no matter what I eat - I have rung the gp for a review of the diabetes - the muscular pain is at bay with the pred but my knees are worse if anything but he did say it wouldn’t stop ra flare ups - I am seeing rheumatology again on the 3rd May but I am scheduled in with some other consultant this flares up my anxiety 😥 surely one consultant per person is adequate
Hello. My sympathies as things can get very confusing with drugs and side effects. I had a very bad experience with Amlopodine. At 5mg I just had a bit of foot and ankle swelling but my blood pressure went up! At 10mg my legs swelled like they had been pumped up, skin tight and stretched and unbearably painful. They added Lefluomide which is also a diuretic but no better and still higher BP readings so I stopped. Now on Ramipril which seems ok ref side effects but still doesn't receive blood pressure so I'm my opinion no point in taking it so I stopped a month ago. Might try it again but didn't assume that because it is prescribed it is right for you. There are probably other meds that will help. Just tell the GP what you are doing/experiencing
Hi marionofnorwich thanks for your reply , that is very interesting they gave it to me as an extra to go in for surgery once just five days of it (4 3 yrs ago) and said because I was ok in it they’d give it to me as an extra with the Ramapril but yes it might be worth making an appointment. To discuss it as my bp has been significantly higher since that was added altho it does coincide with adding ores and metformin to my pills but Thankyou as I could ask them to change my add-on pill to see if that makes a difference , I was perfectly stable in the 10mg of Ramapril until the pred just feeling a bit overwhelmed with it all tbh
Classic testing/problem solving methodology is to add something and observe the effect and then take it away and see what happens. I would ask them to take you off the Amlopodine and then take you BP daily for a week and then every few days for a mnth. Obviously if your BP goes up at any point you need a replacement but if not, maybe it is not needed. That would be my approach anyway. And good luck
Yes I have not been bp checked at the surgery since they added it tbh - with everything else going on I had not realised that but obv I have been monitoring my own at home and it’s deffinately increased my readings are around 165/112 with both tablets which is mega high I was around 147/85 with ramapril alone before the pred
I’ve started my small walks again after the appendectomy but I’m not up to much yet the inactivity does not help the situation thanks for much for the advice
Yes, mine tends to be around 145-149 over 80 on Ramipril or not but it went up to 179/80 a few times on Amlopodine. If it doesn't substantially reduce my BP reularly to 135 or less I am afraid I don't see the point in taking it. Same with statins which can also cause muscular pain. I don't have all your complications but I have a kind of shin splints and random pains in my lower legs not attributable to movement so something else is going on bt no-one can tell me what. My GP surgery call me in for regular blood pressure checks and an annual medication review.
Down to 3.5mg of pred now although my rheumatologist says that my adrenal glands aren't up to scratch and that I need to stay on 4mg but I am reducing anyway and I think my adrenals will catch up. Cortisol level improved a bit over a year. Slow work!
It seems a complicated process for all , I had a diabetic review yesterday and he agreed to stop the amlodapine I’m already 15 lower on sys and 20 lower on dys ! I do take atorvastatin in evening so I asked for a blood firm for that my dad stopped taking his due to leg pain I don’t think they agree with everybody I swear for about half an hour after taking them but that has been my only side effect with them - I’ve been given glicazide to help control the diabetes so fingers crossed that works am slightly worried as it says be careful when taking pred with this tablet but I think someone else here mentioned they were on it .
hi and welcome,
Pred is the only viable treatment for PMR, so no choice really… and yes it can play havoc with BP and diabetes, but they usually both improve as you reduce the dose of steroids. Blurred vision can also be a side effect of steroids .. as for cramps maybe try magnesium supplements.
Sorry to hear about your appendicitis, but that may be coincidental, and your LWC tribunal must be stressful for you.
Maybe have a read through this for but more info bout your healthunlocked.com/pmrgcauk...
Hi DorsetLady thsbkyou also fir your reply , I did not know it was the only treatment 😢 in fact I’d never heard of the condition before being diagnosed an mri of my neck showed some abnormalities but the CMats lady pretty much wrote age related I am 53 when u asked the consultant he said I had 4 trapped nerves and wear and tear but not severe enough for operation
The blurred vision has been since the pred and the cramping but as they added amlodapine and metformin to my pick n mix all within the space of 2 weeks
I wish I had been a bit more questionable at the beginning cos given the choice I would have started the metformin first - which is why I am questioning the Prednisolone altogether it is working for the Pmr definately but with all the other things so high I am thinking the pain of polymyalgia is less dangerous than the consequences of it
If untreated aside from the constant pain I’m not going to die from it ?
It’s extremely unlikely you going to die from PMR, but if left untreated the inflammation caused by it may damage other organs… and it may well leave you open to developing GCA - an associated disease, where much higher doses are required plus the possibility of sight loss. Not something you want by any means.
Nobody wants to be on Pred, but sometimes it’s the lesser of two evils… and as I said once you can start to taper it, many of the side effects do recede.
And we all know it’s overwhelming at the beginning… too much information, too many medications to get your head around… but stick with us, and we’ll get you through it.
Yes that is how I felt at that first appointment - not much choice - also I like not waking up in constant agony so the pred is not all bad - I couldn’t move before it had got so bad I couldn’t dress and wasn’t dressing due to depression nor could I be bothered as the stress and time it took so I feel I was in a downward spiral
I guess I just feel like my whole life is tablets constantly battling with side effects and things going wrong - the tribunal in my mind - and nothing going right - I feel a lack of any control whatsoever in any aspect of my life which as I write it down sounds dramatic never the less it is how I am feeling 😔
Never apologise, it is quite understandable that you feel, as you do…many have felt the same. We can help with certain aspects, but you need help from outside agencies as well… particularly in relation to tribunal..and sometimes the first step is the most difficult when you have to ask for that help.
Hi and welcome.
We do have a few diabetics on the forum and I'm sure someone will see your post and reply.
Hi Pmr pro Thankyou I’m glad I found somewhere to talk about things I think I was starting to freak out 🥹
You have found the right place Pol53 I came here a few years ago and have not left. It's best not to Google anything. Just ask these lovely people. David
hi and welcome.
I too have type 2 diabetes, it was diagnosed about 4 months after my PMR diagnosis and is most probably steroid induced. I was put on gliclazide and changed my diet to low carb healthy fats. I went quite drastic with cutting the carbs as went down to under 50g carbs a day or less. This put me into remission along with extra exercise when I could and at my first review was taken off gliclazide. That was over 6 years ago and I am still in remission and I have lost more than 3 stone and now weigh 8stones 6lb.
I too am on bp meds and statins, seems to be the case of most doctors to give these out. I also have retinopathy and macular oedema. I also have blurry vision due to dry eye syndrome.
The PMR diagnosis was a kick in the teeth but somehow apart from a few aches I feel a whole lot healthier in myself. I am grateful that this illness is life changing but not life threatening.
I am now on 4mg of prednisone and tapering to 3,5mg. All is good.
I hope things improve for you
All the best
Hi koalajane thanks for your reply - I’m sorry to hear that the pred actually gave u diabetes but I’m so happy to hear your still in remmision - I was diagnosed in 2021 diabetes with a hbac1 of 52 which isn’t that high - after a lot of thought I decided to try the lifestyle change first I too went in the lowest carb I could tolerate -lost 3 stone and my hbac1 readings in 2022 was 35 -2023 38 - so I was doing well with it after pred my first reading was 72 I feel that the consultant knew I wasn’t on any medication i wish I thought to ask for the metformin and let it kick in before taking the pred it wouldn’t be so haywire now - never have I had double figures as bfs 15.7 two hours after any food 22.6 and ketones flashing all day every day except after sleeping
I have filled in an online review in my doctors website i will call them tomo if they haven’t contacted me - sorry if my posts are a bit rambly my head is whizzing with it all
Weight loss... I was developing a "belly" and have lost it by practically eliminating carbs.
Have you tried astaxanthin to help with dry eyes?
Hi again koalajane I had a diabetic review in the fine yesterday and he has given me the same tablet you mentioned u had glicazide to take in the morning but I need to continue with the glucophage sr in the evening hopefully this will help I’m hoping I won’t get stomache side effects with it like I did the immidiate release metformin hope u r doing well
I had no side effects with gliclazide. Make sure you test before driving because it can give hypos.
I don’t drive but so far so good in the glicazide my readings were so high I don’t think it’ll cause me a hypo but it has brought me into the realms of normal ! 5.2 bfs 9.2 after lunch 7.1 after evening meal and metformin , I can’t believe it was the amlodapine causing my sugar spiking tho bp has gone up so today I go ask for different supplement bp pill to go with my ramapril but yay for the glicazide not noticed any side effects either
Oh gosh. Too much to deal with and hard for you. I did read some recent research that suggested the side effects of Pred regarding diabetes and bone density loss have been inflated. The study compared those on Pred and those not on pred (not ill). The results showed there was little difference between them. It suggested that the proven side effect was cataracts. Not sure where I found this though so not terribly helpful. But good luck. I'm only 6 months in but feel so much better than at the start. Hope you get things sorted soon.
A paper by Matteson and co.
Hi dinahmite thanks for your reply yes the bone density thing does scare me ! I actually shake taking the alendronic acid as it is so instructional , I am undiagnosed adhd which is another story entirely but the stress of a new tablet leads to hours of reading before being able to swallow the damn pill 💊 I guess it is normal for everyone who is ill to just crave some quality of life I was 16 months waiting for my rheumatology referral and by the time I got seen I was so stiffened up I was grateful to be seen 30 mg of steroids I woke up the next morning feeling like wonderwoman so u could argue I like what the steroids are doing for the Pmr - it’s a shame it has such a serious knock on effect with the rest of my issues
Do you actually need to be on AA… it’s very often dished out when not necessary.
Don’t wish to add more to think about, but maybe request a DEXA scan to check your bone density - and put the AA back in the cupboard until you know you really require it.
I was on it for 4 years because I needed to be, had no problem, but still would advise anyone to check if they need it.
Pred certainly spikes my sugars. Take my pred with breakfast at 8 a.m. and don’t eat until 6.30 p.m. by testing I discovered my bs goes up between 12 and 5 p.m. by 6 p.m. it is down to mid 5s and by 6.30 it is down again to high/mid 4s.
Yes I read that too they’ve told me to rebook eye test I only had one in February two weeks before the pred started but now my glasses are blurry as they are enhancing my blurred vision I’m hoping it’s not cataracts or glaucoma and maybe my bs making it blurry ! It feels like a minefield of side effects right now
you don’t have to take the Pred, it’s your choice. I found the side effects intolerable and way too complicated to deal with especially with not having access to a Rheumatologist more than about once a year.
I would never contemplate not taking pred. I want a quality of life! I don’t want the risk of high inflammation.
Hi bramble2000 thanks for your reply I’m sorry you only have access about once a year that is shocking ! Especially after a diagnosis - I feel alone with it all as well it’s a lot to cope with - my rheumatology is hard to get hold of too I collapsed in tescos from the blurred vision and cramp and it took them 5 days to call me back and then they told me to see my gp! I have an app on the 3rd May I will discuss the pred then and the stability of the diabetes and bp because I feel like this is severe for me too - I totally understand why you felt the need to come off the pred especially as you were not given any support with it there doesn’t seem to be much support out there which is scary in itself I hope they have given you some sort of pain plan medication in its place
" I hope they have given you some sort of pain plan medication in its place"
Unfortunately, pain medication is pointless since only pred to relieve the inflammation reduces the pain. All pain meds have their own adverse effects, some are worse in the long term than pred, especially for heart and kidneys.
I see you were started on 30mg which is a very high dose for PMR, 15mg often works well and 20 to 25mg is plenty if it does. That 30mg given without any advice will have spiked your sugars badly and it was rather remiss of your doctor not to register you are diabetic. And why on earth could your GP not diagnose PMR? More than 70% of cases in the UK are managed in primary practice.
Careful timing of your eating relevant to taking the pred and reducing the pred reasonably quickly should help a lot as KoalaJane has said.
He said he started me in 30 because I’m overweight he actually smirked when I said I woke up like wonderwoman but I too think he started me to high he reduced me to 20 one week later on follow up I’m only 5 ft and im not a giant either but he said he didn’t know where to start my dosage
One physician I have seen at my gosh mentioned polymyalgia over 15 months ago but they would do nothing until my referral to rheumatology came thru I went from a bad neck one arm to falling apart in 16 months with no one doing anything in the end I git the number and rang rhuematology to ask if I was nearing the top of the list and they saw me straight away as I was sounding desperate at this point I couldn’t dress myself my neck was permanently bent left and had to move my whole body to look right I was walking with a rotator and l looked and felt 90 whilst I am struggling with the diabetes. Will give pred my best shot as I can actually move now
He’s told me I’ll be on pred a year then review if it comes back repeat the process for another year 1/3 chance if it going but 1/3 chance of my rheumatoid arthritis taking over tbh I was so desperate by the time I saw him I would have licked the wall if he told me too 🙈
"he said he didn’t know where to start my dosage"
That, together with his other statements, make me wonder how much he knows about PMR to be honest. Not that that GP was much better since 75% of PMR patients are managed in primary care and many never see a rheumatologist.
You may be on pred for a year - but tapering you to zero, seeing it come back, rinse and repeat is NOT the ideal way to manage PMR. Overweight - MUCH overweight, morbidly obese? That is the only place a 15-20mg starting dose would be questionable. I was overweight, probably borderline obese, had had 5 years of unmanaged PMR and 15mg achieve the superwoman effect in under 6 hours. There are people who are tall and well built who do well at 15mg, tiny and small built who take a week at 20mg. So his comment was unnecessary.
You taper the pred, not to zero, but to the lowest dose that works as well as this starting dose. To start with that may well be quite a bit above zero - you might get a bit stuck at 12,5 even, but with small reductions and patience you will get there. Try not to let these "flares" get out of hand, if you do you risk needing to go to a much higher dose and taper again, but if you overshoot and tackle it with our flare protocol of adding 5mg to the dose where you flared for a week or so and dropping back to the previous good dose you should be fine.
Always ask if you have a problem - whatever it is someone will have been there before!
Thanks for all this information ! I basically was given a leaflet sent for bloods given the tablets and sent on my way I didn’t the first week reading and reading ( I was 12 stone 4 at that first appointment in feb btw) I am 11st 1 now but I am v short and do have a big middle area
I sm seeing someone else on the 3rd so I am grateful for all the info I will write down my concerns and questions
I sent for my medical reports from go and it looks like he wrote down will be ordering a dexa scan on there that was in February and I haven’t heard anything so I will raise that too ! I’m still in shock that stopping the amlodapine lowered my bs and the electric shocks and cramps have stopped I honestly thought that was the pred !
Apparently it happens in a significant number of patients - not amlodipine itself to blame but the type of drug. This study reckones a simple blood test would take the unknown element out!
Hi and welcome to this wonderful forum.
I did what quite a few of us tried - avoid Prednisolone and try everything else. I did everything from alternative to the most outlandish treatments for over a year from 2018 to 2919 … until one day the ‘curtain came down over my eye’ -amaurosis fugax and three days later, thanks to my ophthalmologist I was checked from head to toe and started on 60mg pred. I am now on 3.5 mg and feeling quite well apart from episodes of fatigue and generally slowing down caused by a/fib a bonus of the PMR . Or maybe anticipating my 85th birthday in August. ?
Lesson learned he hard way… there is no way other then swallow he bitter pills called PREDNISOLONE!
Take heart, you have joined a group of wise people who really know what they are talking about because they have all been there and ‘through the mill.’
Sending good luck and love. Xx
Hi Umufu Thankyou for your welcome and reply - how scary I’m so glad you fully checked out and treated so promptly - I think it’s all so nerve wracking because everything happens so quickly I am treated for anxiety and depression but I’m off the chart at the moment - probably just too much going on at once
But I’ll be good keep taking my pred ! And hope they can sort the rest that it’s affecting out
I overthink everything I wish I didn’t have to read pages or how a tablet works or what it’s side effects were before even swallowing the blinkin thing - but this is me sometimes I wish I could just get a new head haha
I'm hoping that you are getting proper help with your LCW appeal? The success rate for people with professional (free) help is much higher.
Hi sharitone I was given an adviser from welfare rights but I don’t become her priority until I get a date for hearing I am awaiting my rheumatology records and she will addd them to the case files - the stress of this is unbearable - the assessor blatantly lied and scored me 0 on everything two weeks after my pip assessment whic I wasn’t scored accordingly and got so I have obtained those records for them to compare similar questions - but the welfare woman doesn’t feel on my side she said it’s not the sane assessment sbd that even tho I can’t dress and bathe alone I can work - I’ve not met her in person and my assessment was last year in May it should have been the year before in October but they failed to call - I am glad I complained because they were blaming me for failing to attend ! You cannot attend a call that doesn’t happen I got an apology but then it took them s further 7 months to given me another date so I have been on continuous fit notes since June 2022 ! And the jobcentre won’t accept them since my assessment in May 23
So yeah I have someone helping somewhat!
Oh dear, poor you. I don't know where to begin. Representing people with benefit challenges was my job with Citizens Advice. Has your adviser not helped to prepare a statement to send to the DWP BEFORE the tribunal? Even if these do not get a decision overturned, it is useful for the tribunal to have a clear argument to read before they interview the claimant.
Don't take it too badly that the assessor lied and gave you 0 points: this is so common as to be usual. One of my clients was so badly mentally unwell that she cried throughout the assessment, but the 'Health Care Professional' still recorded that she showed no signs of distress! Fortunately her housing officer was there to be a witness. usually they come across as very pleasant, but then write a damning report. Their job is to stop people getting benefit. Happily, the tribunal is much more even-handed. I assume your adviser will be at the tribunal? If not, it is always good to take someone who knows you and your condition, as they may be allowed to fill in any gaps. It also helps with your nerves, so that you are less likely to forget important points.
If you are unhappy with your adviser, it is not too late to get another. Here is a link to an Age UK information booklet which gives a list of useful contacts at point 15. Organisations like Citizens Advice, even if they do not have a specialist to help with appeals, can tell you where to find one locally. the Scope website also has some useful advice, and there is a link to a list of advice available locally
I should have warned you to read and edit your rheumatology report before someone sends it to the tribunal people, or DWP. Medical notes are not written for benefit purposes and may contain phrases that are meaningful in their context, but devastating in applying for benefits, eg 'he is able to look after himself' may simply mean he can eat and get dressed by himself, but the DWP will take it to mean that there is no problem.
Why are you on Alendronic Acid, I wonder ? Did you have a Dexa scan before starting it ?
He said to prevent osteoporosis but no I didn’t have a scan of any sort and my blood tests are monthly hbac1 and gca testing I’m not sure if they testing bone density in that also
Bone density need to be check with a DEXA scan - I did mention it earlier in thread... so please request one to see if you actually do need AA.
this link explains all about them -
healthunlocked.com/pmrgcauk...
I will ask for one at my appointment on the 3rd May Thankyou fir the information -I did ask the gp on the phone call -his answer was -it is probably because u also have osteoarthritis and rhumatoid arthritis diagnosis but I will definately mention the scan as I feel like they have given it to me as a precaution rather than a necessity .
Please do…. And with a scan at least you will ‘know’ whether you actually do need it…
I sent fir my medical records and it seems he has mentioned that he was going to send me for this dexa scan but I have still not heard anything and that was in feb so I will raise the issue of this on the 3rd with the other consultant - so Thankyou for mentioning it because I would not have know at all
Hi I have PMR and GCA . All being managed with methotrexate since was intolerant of steriods. I have always refused statins since little evidence that actually benefit women. (think you said on them). Don't take Alendronic Acid which seems to be prescribed automatically. So far so good (3 years.) Perhaps consider methotrexate doesn't work for everyone but sounds like the steriods are not liveable with for you all the best
After being on Prednisone for seven months and down from the initial 15mg to 7, I developed Macular Degeneration (probably caused by steroids). Over the space of one month, my Rheumatologist switched me from Prednisone to Hydroxychloroquine (400mg). It took me another year and a half of HCQ reduction to finally be PMR free, but it did work (for me). So there ARE alternatives to Prednisone.
My blood pressure is controlled with Valsartan. And I quit taking Simvastatin five years prior to getting PMR (I believe statins are useless, damaging to muscles, and actually a major cause of PMR).
Low carb diet (sometimes even a Keto diet) helps me keep the weight off. But I am not a diabetic and carrying only an extra 20lbs. Male age 75, USA. Journey with PMR started June 2020. I still tire easily, but that is probably more to do with getting older.
Not a doc, so I am only relating my personal experience with my PMR.
Hi hosers2 Thankyou fir your reply and sharing your journey it is very helpful - I tried the keto diet in 2021 and reduced my hbac1 to 35 unfortunately it had a knock in effect with my cholesterol and I was then put on atorvastatin- I use diabetic recipe books and do feel like my diet and eating habits are the best they can be for me I started the glicozide yesterday and so far my readings are great so hopefully I’m on the road so some firm of stability !
Interesting what you said about stating actually causing pmr!! Lot of controversy about them but are given out like sweets .....
Yep. New studies are now debunking the necessity of the bulk of the population being put on statins.
My doc increased my Simvastatin prescription, almost doubling it year after year for three years. I first experienced right shoulder pain, which was diagnosed as rotator cuff damage. Surgery was suggested, but I declined. After a year, the pain switched from my right to left shoulder, with the same diagnosis and surgery suggestion. Then, I developed carpal tunnel problems, freezing up the three small fingers of both hands, and making my wrists feel like I was taking a hammer to them every night. Of course, carpal tunnel surgery was recommended (and declined). Then. . . . .my hips. To the point that I couldn’t get up off the ground on my own volition. All the while, my cholesterol numbers reduced from 240 to 235.
After researching patients blogs, I realized that it was probably the statins. So I quit, cold turkey. And within 30 days, every muscle pain had disappeared. I was pain free and loving life for almost five years. Then I woke up to PMR. The exact pains had returned in full force, at every location, all at once.
That is why I absolutely believe Simvastatin is the reason I got PMR. And suggest that anyone with PMR consider eliminating statins from their intake. I would almost bet that most of us on this blog are either taking statins, or have in the past.
Again. I am not a doctor, never claimed to be one. I am just relating my own personal experience and opinion.
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