Hi all, looking for some advice/insights from you all. This is my first time posting…
My question is, is it usual for prednisolone to affect bones quickly eg in about 8 months and have a T score of -3.8 in spine? Or has this happened so quickly for anyone else?
Some background…
I was diagnosed with PMR in Dec 2021, textbook symptoms according to GP (I’m in Australia). Bloods taken but before results I started off on 25mg Pred for 5 days and felt great relief, then back to 20, then a follow up appointment in 4 weeks. I’d never heard of PMR and in the meantime I’d done a bit of research. Inflammation levels were elevated but not sky high. On second appointment I asked about calcium supplements and was told “not needed in my case”. Also not necessary to see Rheumatologist. I was to continue tapering to 15mg then to 12.5mg then eventually to 10mg(reducing each month)
This doctor left the practice and on my next visit I saw a different doctor. I had been experiencing discomfort in my pelvic girdle at 12.5 and wanted to know if I should increase to 15 where everything was ok. This dr said I shouldn’t be experiencing pain if I had PMR and was on Prednisolone and He also wanted me down to 7.5mg and onto Mobic (anti inflammatory for pain relief). I sat there in shock. I went away and did more research and on my next visit to see him I said I hadn’t filled the script for Mobic because of interactions with Pred. I was now on a dose fluctuating between 12.5 and 10. He was a bit cross but then referred me to rheumatologist and x-rays to rule out arthritis because the pain in my pelvic girdle could be due to “old age”. I’m 58!!
Anyway I couldn’t get in for X-rays for a while and it was a 3 month wait to see rheumatologist. In the meantime my regular dr was back from maternity leave and on discussing things with her, she was happy for me to manage my dosage until I saw the rheum. She also didn’t think I needed calcium or vit d supps.
In August I saw rheumatologist for 1st time, She agreed with original diagnosis of PMR. Ordered DEXA., which I had to wait another 3 weeks. Three days after my scan the rheumatologist office rang to say I had to start taking calcium & vit d straight away and to come in and discuss results.
Shocked to learn I now have osteoporosis. -3.8 in spine, -1.5 in hips. Started on Actonel weekly (I’ve had one dose so far).
thanks if you’ve read this far!
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WearyLucy
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Sorry to hear your tale, but I doubt Pred would have affected your bones that quickly, my guess is you were already heading towards osteopenia if not osteoporosis before PMR diagnosed.
However you should have been prescribed a calcium/VitD supplement initially, and sent for DEXA scan.
As for 2nd GP you saw, the only good thing he did was refer you to Rheumy and for X-ray (ignore old age comment). One of my GPs (now retired) said most people over 50 have some osteoarthritis- for some it’s an issue, for others it’s not.
Have a read through bone health in FAQs full of info on how you can help - linked here-
Thanks for reading! I’m glad I finally got to see the rheumatologist… if it hadn’t been for me refusing the Mobic and the Dr getting cross with me, I don’t know where I’d be! He basically washed his hands of me and hand balled me - only after the x-rays so I “wasn’t wasting the rheumatologist’s time”!! The x-ray did show the beginning of osteo arthritis in the hips as well so at least forewarned is forearmed.
I’ve been watching some videos linked through this site about osteoporosis, thanks for the other link - I will be sure to check it out.
Thanks for reading, I wish I had just taken the vitamins myself! I had read of others doing the same and that’s why I asked the question. My bloods showed a good level of vit d last time I’d been tested in Oct last year, and I guess due to my age and larger frame, the dr thought I was at low risk.
I’m on the hands of my rheumatologist now so hopefully my bone health will improve!
Slightly appalled at the "you don't need calcium and vit D" since that is in the recommendations from the rheumatological societies. It COULD have affected the bone density quickly but since the hip reading is fine and you are on PMR doses I suspect it was already there to some degree before PMR and pred. You are on vit D and calcium now - it is essential when on Actonel (risendronic acid) as well.
Also disgusted at the GP who wanted you on Mobic rather than pred - if it is PMR, Mobic (meloxicam) will do nothing except increase your risk for cardiac and renal problems long term and mixed with pred there is an increased risk of gastric bleeding. The instructions are that it should be used at as low a dose and as short a time as possible. Plus - if you shouldn't have ANY pain with PMR then obviously NONE of us have PMR! It may be a bit over-diagnosed - but not that much!
Hi and thanks for reading and your comprehensive reply. I’m quite upset after this diagnosis but after some thought, I figured I may have had the start of osteoporosis earlier before Pred but it just hurried things along. We will never know! My rheum seemed quite positive that with medication my bones will improve, however I’m worried now about fractures. I will have a big list of questions next time now that I’ve had time to think.
I’d like to thank members of this forum also, I have learned so much since I discovered this group. Someone on the PMR Facebook page put up a link.
I knew anti inflammatory drugs don’t work on PMR that’s why I was shocked when Dr prescribed it. He was very busy at the time and I almost felt dismissed but I wonder if he was getting confused with another condition. After reading up on Mobic I decided not to fill the script (he had given me a script to stop the stomach bleeding). As I said he was a bit cross at me for not following directions!
Anyhow I’m coming to terms with the hand I’ve been dealt. I’ve been recommended by rheum to do some more exercise (I’ve put on 15kg since starting Pred) and have already cuts back on sweets and cakes etc.
As you’ve migrated from Facebook then maybe read the FAQs (featured content under first post on page or see Pinned Posts) starting with this for general info -
The fracture they are most concerned about is the hip - you have a normal level there. The t-score in the spine is quite a bit lower - and to be honest it does make me wonder if the reading was skewed - it can happen, even a slightly off angle of the beam can give differences in the result. However - be that as it may, you aren't going to crumble immediately
There are activities that put your spine at greater risk of fractures if the bone density is low (they claim, low bone density doesn't inevitably mean fractures) and activities that are beneficial:
is mostly about what to do if you DO develop a spinal compression fracture but it also has a section about how to prevent developing one which is important for you. So is looking at your home and lifestyle to minimise the risk of falling. Removing loose rugs or trailing cables is one quite easy measure - to remove trip hazards. Improve lighting in dark corners - and use it, put lights on when you need them, especially if you get up at night (my husband didn't and fell, causing a spinal fracture). Wearing shoes rather than bathroom slippers is safer and being sure any tiled floors are not wet - my neighbour, very fit (she usually climbs mountains!) slipped in her kitchen on spilled water and did her shoulder, upper arm and lower leg, all in one fell swoop! Without osteoporosis! Keep well hydrated and keep your muscles fit to keep your balance good.
If you are still worried - ask for a physio appointment to discuss the right exercises for you to minimise the risk of falls. And then get on with normal life - no point worrying,
As I said - that means most of us here don't have PMR! Pred is good - it isn't that good and even on the right dose for you, it is very unusual to get 100% pain relief. Some of these doctors, who have never had PMR or taken pred, do come out with some amazing statements!
I was told this too - not advised to take calcium; told I could eat cheese if I wanted to, not advised to take Vit D although I do take some. I was also told there was no reason why I should need a steroid card. I have one now as when my original GP disappeared the locum I spoke to said I should have one. It would help everyone suffering with PMR if there was some standard advice - i.e. use vitamin D, perhaps with K2 and eat calcium rich food or take a supplement etc. It would also have been good to understand that once you are on steroids then you face several fronts: (a) PMR, (b) steroid withdrawal, (c) adrenal insufficiency, (d) flares from too quick a reduction or too much physical activity for the dose you are on. There's more to it than meets the eye, maybe.
The calcium and vit D is standard for everyone, dexascan recommended and then treat appropriately. As for not needing a steroid card - OMG!!!! The new card has been introduced because of the lack of awareness of steroid withdrawal/risks of adrenal crisis on the part of healthcare professionals - the people you'd think would know!
As for flares from too quick a reduction - out of their worldview I fear, their aim is to reduce pred asap come hell or high water.
I don't know if they are a "thing" in Australia. They don't have them here in mainland Europe as far as I know.
It doesn't matter where you are, some doctors haven't kept up to date and in the case of PMR there are no "latest treatments", it is prednisone/prednisolone that is the mainstay. The only difference is in the detail of how it is used. On the other hand, some of the top researchers in the field are in Oz - Claire Owen in Melbourne has a superb understanding of the pathology of PMR.
DorsetLady thank you so much. Just reading through the sick day notes about persistent diarrhoea… I had Covid at the start of August and advised doctors etc at respiratory clinic about symptoms - along with all the usual (sore throat, headache, extreme fatigue) food was pretty much going straight through for about 5-6 days. They knew I was on steroids but said nothing about adrenal crisis. I took about three weeks to get over Covid and a few phone consults were had, then I got severe back pains. Only then did one of the drs suggest upping the Pred to 20mg for a few days.
Put a post up and ask if anyone is there. I'm sure someone I have met in the research round was in Adelaide but it was a few years ago - everything was pre-Covid!!!!
has been instrumental in moving GCA on in Aus and is involved with OMERACT which will have been where I came across her as she co-chairs 2 of the groups I have been involved with. I don't know what she is like as a doctor though or how easy it is to see her.
Hi, I agree with all your comments regarding the warnings! At the beginning all I wanted was for the pain to stop. The doctor said some people are scared of steroids but I needn’t be… I think my situation is complicated as my regular doctor was on maternity leave and I then dealt with two other different doctors. All three have different ideas and attitudes and then there is the rheumatologist! I’m not sure of the prevalence of PMR here in Australia - I had never heard of it and I’m not sure some of the doctors are fully up to speed with the latest treatments.
There are no "latest treatments. There is one option for managing PMR symptoms - that is the only thing that can be done, there is no cure - and that is pred. The only difference is how it is to be used best.
I wasn't told any of those things either. However, I was in such a dreadful state by the time my PMR was diagnosed that I doubt that (b) or (c) would have deterred me even if I had been warned about them. I was warned about the side-effects of steroids (weight gain etc). I was prescribed Calcium and Vitamin D and had both PET and DEXA scans. In fact, the rheumatologist wouldn't start the steroids until the results of the PET scan were known, which delayed treatment for a few weeks.
It interests me that so many people are exclusively treated by their GP. My GP referred me to the hospital straight away and has never been involved in my treatment other than ordering blood tests at the outset and renewing prescriptions. I don't know whether that is because there is a large hospital very close by or whether it was because my symptoms were slightly unusual (under 60 and with the main pain and stiffness in my knees and lower legs). There was no trying me on steroids and diagnosing PMR if they relieved my symptoms.
I have a rheumatologist friend who lives in Australia and he says he loves PMR, you just give people steroids which act like a miracle and they are eternally grateful!! He probably forgets about vitamin D and calcium too. My neighbour takes Actonal and she reckons it is a lot better than Alendronic Acid which seems to be quite popular. You probably would not have known about your bone density without PMR, so it does have some advantages. I am glad your normal doctor is back.
Hi and thanks for reading! Yes I certainly thought prednisolone was a miracle, for a start I had so much energy. But it’s a long road and no easy fix as I have discovered. My mother (who passed away 7 years ago aged 86) did have osteoporosis but that wasn’t diagnosed until her late 70’s when she had a fall and broke her hip. It can be hereditary I’ve discovered, so possibly it was lurking. At least I know now and getting the right treatment.
Had your mother been checked for osteoporosis before she broke her hip? She may have had it for a long time. Age UK say “worryingly few people know they have it until they break a bone.” It does seem bone density can be in the genes.
I don’t remember if she had been tested… I was talking things over recently with my older sister who had more to do with mum’s health care, and I thought osteoporosis was something you had to watch out for at a later age than myself.
Osteoporosis can start at 50. As Age UK say there are quite a few people who do not know they have it. In UK it is getting harder and harder to get a Dexascan anyway even if you have PMR, so people just never find out.
I think healthcare is under stress just about everywhere in the world. Its sad and frustrating that diagnostic tests are hard to access. Prevention is better than cure they say, I have asked my two adult kids to check with their drs next visit for appropriate supplements. They are 28 and 31.
Not even as late as 50 - bone density starts to fall from about 30 anyway and it is increasingly common for poor lifestyle to have led to good bone density not having been developed in youth - eating disorders, junk food and choosing to be vegan without careful thought about diet all contribute. When you start from a low baseline you get to osteoporosis sooner.
I was on 60mg pred for GCA then also PMR. The dr forgot to get me the bone protection infusion and I ended up getting a rib fracture just from walking around and later went into osteoporosis. I took Vit D from the start and calcium recommended after dexa scan results. I don’t know what to say to you but the rheumatologist is happy I’m also doing strength training. Good luck.
Thank you, I’m to see a physio when I can get in, for suitable exercises. I try and walk a couple times a week but am still working full time and some days I’m just too tired. I understand a mix of strength, weight bearing and balance exercises are the way to go.
No, sitting mainly but up and down off the office chair to the printer and to serve customers. Always used to be more active on weekends with gardening, housework, camping and walking etc although hubby has been helping out with housework since January.
I think my past lifestyle is probably catching up with me if I’m honest. Always on some sort of diet when younger, although I exercised regularly. The past 5 or 6 years I haven’t made the time for myself for regular exercise so I guess my chickens have come home to roost.
Not necessarily at all - I was a regular at the gym when my PMR appeared! Meant a complete overhaul of the sort of exercise I did. And there are a few on the forum who were into really high level sports.
It's quite funny here - every place that has a central printer has it miles away from the offices! Means a decent walk every time they use it.
Also in Oz. Been under rheumy care for five years and never had Dexa scan suggested or mention of steroid card. I also thought she was a miracle worker when I went in agony and unable to lift myself from a chair. A couple of 15mg doses and I felt like myself. She added methotextrate after 18 months when my reducing had stalled and I finally got off the pred in four and a half years. Now hoping to be off MTX by the end of this year.
Great site here for advice. Best of luck with your journey.
Hi dancersize2, what state of Aus are you? I have found this site excellent as well. I am now facing having to go onto methotrexate if I can’t taper down to 5mg by start of Feb. Rheum wants me off Pred ASAP because of the osteoporosis… I am on 8.5mg for the last couple days and doing ok, just a little more stiffness in morning but it goes away and isn’t painful. Fingers crossed it all goes well.
I'm in Victoria. The MTX did enable me to get from 6.5 to 2.5 in 2019 and then I took two more years to slowly get to zero. Rheumy wants me to use the MTX rather than pred but I dropped dose to 15 then 10. Times I found it a bit hard to take because it made me dizzy and worn out especially the day I took it.
I was diagnosed with PMR in March 2021 on 20mg to taper down. I Also asked my GP after a few months, about Calcium and Vitamin D and a referral to Rheumatologist, I was told not necessary on such a low dose and maybe Rheumatologist referral in the future if things got worse! I am 61 and post menopausal so I thought I would qualify for Supplements and Vit D so I bought my own supplements! Almost a year to the day of diagnosis in March this year my Pred dose was ramped up to 40mg for suspected GCA but fortunately unfounded, phew! After this I went down hill fast trying to taper, probably too soon, getting Covid certainly didn't help. In July I went into work as normal, reached up to the key pad the pin in on the school gate and had excruciating pain and heard a loud crack across my back! I was seen at my local minor injuries unit, examined and told it was most likely muscular due to PMR. After getting worse, told to keep tapering, given stronger pain relief Co-codamol and paracetamol and seen by a different GP who referred me for an urgent XRay on my back, it was decided this was possibly Osteopenia or Osteoporosis. I have waited a very painful 26 days for my Xray results, I have wedge shaped fractures to my thoracic and lumbar regions, caused by Osteopenia and medication! I am awaiting an MRI scan and prescribed Diazapam and Gabapentin. I am extremely upset that I wasn't listened to in the beginning by my GP and furious with the 26 day wait for an urgent XRay referral. I have had to give up my job, I can't drive and am very limited to doing everyday things!
My advise to anyone being prescribed Prednisolone to push for calcium/ Vitamin D or bone strengthening meds right away.
That is appalling - especially if you were told "at such a low dose" - 20mg and above is defined as a HIGH dose. And as for the MIU - the examination for spinal fractures and muscular effects is very different, my rheumy often does them and send me for an x-ray anyway to be sure!!!!
Is there not a walk-in service for x-rays locally? But a letter in your hand and send you to the ED is the next option.
Possibly but our Minor injuries unit has only reluctantly reopened after Covid and you have to book appointments🙄 I live 10 and 16 miles to both main hospitals and our local hospital is 6 miles, likewise my GP Practice.
I’m so sorry to hear about your situation, what a shocking experience. it’s very upsetting to be given incorrect/incomplete information - I think we all trust our doctors in the beginning to give us all the information we need, but sadly this isn’t always the case. I hope you improve enough with medication and therapy to get back to a normal routine.
Hi there WearyLucy ive also been on prednisolone for 10 months but was put on adcal from day one .The prednisolone has done damage to my knees also and i have osteopenia . Im off the prednisolone 6 months now but still getting lots of side efdects mostly inside my head ive heard it can take up to a year to feel anyway normal again . I think the adacal helps .Hope your feeling much better soon . Im from N.ireland .
I had almost the same scores as you and I thought it was a bit strange to have two such very different scores. I rang the osteoporosis society (in UK) and they said it was very unlikely that these they were accurate scores. They felt quite sure that the operator of the scan or indeed the scanner (or maybe I was positioned wrong) had caused the scan results to be skewed. My doctor would not agree for me to have it done again (because he said they are rarely wrong) for two years, which is in two months time. I have heard from many others since that they can indeed be wrong.
Don't know anything about them - but there are other technologies besides the big fixed machine.
If it is the test done on the heel, I don't know how reliable it is. They had one here a few years ago and discovered they didn't really match dexascan results.
OTOH - there are mobile dexascanner services, just as there are mobile mammography services that travel in HGVs
That’s interesting, I wondered myself once I’d left the office and had time to think why bone loss would be greater in one area of the body compared to another. My forearm measurement was -0.7 - rheum said she was surprised at that because that’s a good score. Thinking back to when I had the scan done, I had a suspicion the person doing it was under supervision as there were two of them (or is that a usual thing?).
I am not going to have a DEXA scan this next time because my GP is insisting that I have a scan on the same scanner with the same operator. I am going to pay to have a scan using X-raysREMS (radio frequency echographic multi-spectrometry). Apparently they are more accurate. I wonder if anyone else has had one of these?
I definitely feel that you may have had an inaccurate scan done WearyLucy. I would be really interested to know what your scores are next time.
I am only replying because I did Actonel for several years back when I was around 60. Just osteopenia then. Now at 75, after 14 months on pred and methotrexate, I had a my annual DEXA expecting full-blown osteoporosis and - a miracle!!! - my numbers were the same. Stable at -1.75 to -2.50. Even my doctor was surprised. So I do think those years of Actonel helped. I am terrible about taking calcium daily, but do love milk and dairy products. Also, before PMR set in (May 2021) I was very active. Running 5K's even. So maybe that contributed to stable bones. I am now stuck at 5mg of pred and the fatigue is really hard for me. But I do a water exercise class and a chair yoga class twice a week to keep moving.
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