I have read yesterday's comments about DEXA scans and taking AA with interest - and concern. After initial diagnosis and getting going on meds (Pred only) my GP said she didn't need to see me until I had reduced to 5mg. As time went on it was clear that this wouldn't happen in a rush and I asked for your advice, which I followed - to see my GP at least every 6 months 'no matter what'. This I did, thankfully. She still said I don't need either a rheumy or a DEXA scan but, as I am now a 'long term steroid user' and female she prescribed AA and Adcal. Seeing the comments from yesterday, in particular about being relieved not to be on AA, am I missing something vital again? What's the problem (s) with AA? I am so worried I am being misinformed. This forum is by far the best thing I could have come across. Heaven knows where I would be without it.
Thank you!
Debbie 🌲🌲
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DebbieF1603
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Hi Debbie, You seem to be being left very much to your own devices here. No wonder the forum has been an important source of support for you. The DEXA scan which measures your bone density will tell your doctors whether you actually need Alendronic Acid or similar to prevent further bone damage by steroids. It belongs to a group of drugs that are actively promoted by doctors. They are only necessary if your bones are showing signs of Osteopenia or actual Osteoporosis is present. Otherwise they could possibly do more harm than good. They are powerful drugs with potentially serious side effects. If you google the side effects you will see what I mean. People on this forum have taken them without issue but equally others have stopped because they cannot get along with them. Ideally the additional threat to bones can be dealt with by supplements like Adcal and some weight bearing excercise as well as a good diet.
For these reasons I was very relieved to be told that I didn’t need them following my bone density scan. Some people have commissioned a private DEXA scan at a cost of around £65.00. I would strongly advise you to press for a scan.
You should have been on Adcal from the beginning, for most people that is enough to protect bones and they don’t required AA as S/Jane has already advised.
If you only have PMR then you don’t need to been seen by a Rheumy provided your GP is au fait with the illness - yours sounds a little gung ho to me! But as you’ve had no problems she can’t be all bad.
I had GCA and only saw a Rheumy once, but I did have regular blood tests and discussions with GP - monthly at the beginning.
If you have a family history of osteoporosis you may need AA, I did and took it for 4 years with no problem, but it doesn’t suit many and why take another tablet unless you really need to? So push for a DEXA scan.
Thank you. Other than the obvious limitations of PMR, I am generally healthy and walk at least 5 miles a day and eat well. I've never taken any medication until now and that in itself is difficult to get my head round. I had an ECG a couple of weeks ago because of chest pain, which I can now see was probably an effect of the AA. It came back clear fortunately. Thanks again.
Dorset lady can you please tell me how you know you have pmr I was told by my renal specialist that they were sorry they bdidnt pick it up earlier and a few months after got told by go that I didn’t have it
Steroids did wanders and so scared if he just stopped them I have cut down now on mg I don’t want them but sure as don’t want this pain although I don’t know what is pmr or if the pain I’m now in is due to hip and pelvis problem
Would be so grateful if you or anyone out there
Can tell me how you know what is pmr thank you yes steroids do help tremendously but pain not completing gone
Unable to walk but have been told this is how it will be I’m learning tp except that’ but need to get rid of this pain that comes on when I get up
It is a clinical diagnosis made on the basis of the symptoms, raised blood levels of ESR?CRP in 80% of patients add to the suspicion, response to a moderate dose of pred - and ruling out a lot of other things.
Why does your GP say it isn't? And why can't you walk? Well managed PMR doesn't stop you walking - and even if you can only manage a short distance, if you start small, walking every day, and then add a couple of minutes every week it soon builds up.
You have answered one question Dorset lady so it’s not pmr that stops me walking it’s all the arthritis and osteoporosis And spinal stenosis I have so that rules that one out
The nasty pain from the hips and pelvis is arthritis
I thought a month or so ago pains elsewhere had gone except for a few in shoulder
But if I drop another one mg of prednisone the pains become worse
Is steroids used for crumbling bones
I wish we could talk to doc like this I believe we would get somewhere
PMRpro has answered, nothing to add really except to say if it’s arthritis then low doses of Pred won’t mask it whereas higher doses may have.
Hi,
I think you need to look at the evidence base for AA and the published clinical guidelines with your GP in order to make an informed decision.
Here is the Cochrane review on biphosonates and steroid induced oesteoporosis. They are excellent guides as they look at all the research on a subject and then compile a report.
It includes a lay summary and the numbers needed to treat to bring benefit ( e.g. You need to treat x number of patients to bring benefit to 1 patient ).
Every drug has potential side effects, the list for prednisolone is very scary yet it can be a life saving drug! It's important to have all the information to make the right decision for you taking into account personal views on risk V benefit.
I will post this again...............the National Osteoporosis website gives you all the factual information you need and also a list of alternatives to AA.
The FDA (USA) put out a warning a couple of years ago that if you do take AA it should never be for more than 5 years.
You will also find that some Dentists will not do work if people are taking AA. It can cause what is called Jaw Necrosis. Please note I said 'can'.
I was given a wonderful book recommendation on this site.. It is on amazon and called
Your Bones: How You Can Prevent Osteoporosis and Have Strong Bones for Life―Naturally by Pizzorno, Lara I HIGHLY recommend it. It is quite anti AA and might be exaggerated but I prefer not to take the drug (and I am already just into osteoporosis re last two Dexa scans) but am doing Calcium K2 M7 and weigh bearing exercises. My concern was I am only 71 and if you only can take it for 5 years. what will I do when I am 80? My mother, although osteoporotic, waited to take it until she was in her 90's.. never broke a bone and lived to be 98. ! I'll have that.!!
The GP who diagnosed me was rather like yours and prescribed pred and a PPI to protect my stomach from the pred (!), both of which are not good for bones - no mention of bone health or calcium and vitamin D and "Have another blood test in 6 months". 8 months later, another of the GPs picked me up, prescribed calcium and vitamin D and arranged a Dexa scan on the NHS (you should not need to pay for a private scan, although others have done) and the outcome is that I have osteoporosis. My notes say that I will be recalled for a repeat scan 2 years after the first.
I take a bisphosphonate called Risedronate - I think it's probably much the same as AA. I'm thinking I might stop this when I eventually come off pred, or sooner if I'm on pred for a very long time!
Me: PMR 19 months - on 7mg, with one flare 12 months after diagnosis when I was on 4mg.
I had been on pred for over 7 years when I had my last dexascan. My bone density had shifted from a t-score of -1.0 to -1.3 in that time. Well outwith the ospteoporosis range. I took 4 AA tablets before doing my homework and discussing it with a different GP in the practice who agreed with me that it wasn't necessary yet according to my dexascan result and calcium and vit D was appropriate at present. Had I not had that dexascan and continued taking AA it would have been for 7 years where it was totally unnecessary.
It isn't a drug that has no side effects and can be taken for years - that was how the drug company sold it. Now the chickens are coming home to roost - used over long periods there are problems appearing so it is a good idea NOT to use it "just in case" - because you might not have needed it in the first place. If you have a dexascan you are able to make an informed decison - without one you can't. Many of us on the forums have no needed it, others were fine for some years and no need it. There is no evidence taking it "just in case" will prevent fractures - and that is their justification.
Thank you very much for this concise assessment. I'm going to sort a DEXA scan, private or other wise. I don't like the idea that I am not being properly assessed and my meds are being prescribed ad hoc without any medical founding.
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