I had a Bone scan yesterday and commented that my Dr put me on Alendronic tablets back in August and although I questioned her at the time she reassured me I needed them. The hospital were very surprised as they suggested Dr should have waited for Bone scan results as Adcal would be sufficient in the meantime. They also said Alendronic is very strong/powerful tablet.
Would appreciate any advice.
I am now on 30 mg Pred which I take in the morning after successfully reducing evening dosage to zero and in next 4 weeks going down to 25 mg all being well.
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Fredddie
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Hmm, I’d certainly push for my results if I were you. The doc should give the numbers to you. Many docs just put people on bone drugs as a matter of routine when prescribing Pred.
I agree wholeheartedly with the hospital. Too many doctors think that a) loss of bone density is inevitable with pred - it isn't b) that bisphosphonates are wonder drugs with no adverse effects - they aren't.
Our usual line on the forum is to wait for the dexacan results - and no dexascan, no AA.
It's nice to hear that the opinion at the Hospital is the same as ours even if GPs have this terrible habit of diagnosing heavy duty drugs ' just in case' and giving our bodies more to deal with than they need to.
Hi, I did question it with Dr first after what you originally told me but she insisted I needed it. However now after hospital yesterday I’ve decided to stop until I get results. Fortunately I’ve only taken 2 tablets over 2 weeks as was apprehensive about taking them anyway. Steep learning curve. Will know in 10 days😊 Thanks for support.
I followed your advise and refused twice the AA I was pressured. Spoke to my dinlaw a pharmacist in Germany spoke to rheumy nurse when bingo a Dexascan ordered. Vindicated I don't need at 82 any AA or indeed any other preventative. Bones normal and at low risk fracture. Pleased and relieved as I am a none milk etc person and have been all my life. One unopened lot of medication to add to the others.
Push for the results ASAP. I refused AA and politely demanded bone scan. Mine came back as normal except for slight osteopenia in spine. But my results took 3 months to be reported! So I’d nag if I were you.
Have been on AA for about a month. No side effects, yet. My MD called after my bone scan said it was normal to just take Calcium. My Rheumatologist looked at the scan and prescribed AA......and said I need to stay on it for rest of my life, even
after I am off Prednisone. I have had a fractured pelvis, fractured foot and ankle. I will do whatever my Rheumatologist recommends. He also sad to take Calcium and
Increase dairy....( milk, cheese, etc.). So far so good.......
I fear your rheumy is a long way out of date. The current advice with bisphosphonates is that a "drug holiday" should be taken after 2 to 3 years to reduce the risk of the longer term adverse effects. It has been found that using them for very long periods can lead to the development of bone of a different structure with micro-cracks which, ironically, make the bone weaker and more likely to fracture. It is a lot more complicated than the drug reps suggested when the big marketing push was on when AA was launched.
When were your fractures and what caused them? If there was any suggestion that low bone density were a factor they would have checked then - people with normal bone density can have fractures, people with low bone density don't necessarily do so.
Mine said taking AA for more than 5 years was counter productive as by then the large bones in the legs were more likely to become brittle and fracture.
Same happened to me but I stopped taking AA after 10 months. Had to ask for a dexa scan and GP questioned why I wanted one. She reluctantly agreed. I didn’t need to take from results (GP didn’t discuss results just dismissed them). The radiologist even commented that I didn’t need Adcal as my diet was more than sufficient. I have not taken AA again.
I’m beginning to think it’s a lottery as to what response we get from our doctors! I’m going to go with my gut instinct until proven otherwise as too much confusion! It’s a shame your Dr didn’t want to discuss results with you and apologise - a tablet you don’t have to take and saving NHS money too!
Hi I get where your coming from but if you don’t need it? Proper care and monitoring is a win for both patients and NHS. I thought Drs treat use as individuals not on mass as we are all unique. Maybe I’m naive. This is a real eye opener for me!!
Pred causes increased fracture risk whatever the bone denasty. Not sure why everyone is so worried re bisphosonates ... they've been well tested for years now. I was on risedronate for around 15 years with no side effects especially stayed on once I started prednisone. Having my mum and one sister with severe osteoporosis. ..there's no way I wanted to risk it.
Pred needs good effective prevention treatment not just calcium.
Sorry but it is considered beneficial to find out the bone density before taking the likes of AA medication with its recognised side effects. As you have a family history of osteoporosis then taking bisphosphonates was maybe a logical decision for you but that doesn't make it essential or a suitable choice for everyone.
Thanks for your comments. I used to work in the bone metabolism department and was lucky to get a slot when someone didn't turn up. I just had osteopoenia but found the BMD had dropped 10% in 5 years. I was able to persuade my GP then 20 years ago to start me on a bisphosonate. So pleased I did when my vasculitis was diagnosed 6 years ago and 60 mg pred started. My bmd was above normal by then and felt I've at least given myself a chance. There are side effects and contraindications but they can be overcome. Established osteoporosisis is permanent.
Each to his own though. ...as you say. Good luck with your treatment. Mine is not PMR but GCA....both horrible illnesses. ..we have to stick together! !!
"Not sure why everyone is so worried re bisphosonates ... they've been well tested for years now."
That isn't entirely true in terms of them being safe. Before Fosamax they were used for a relatively small patient population - and for their purpose you quite correct in feeling they are justified. I wouldn't argue with that either. However, the Fosamax marketing push has been to medicalise a normal situation - some loss of bone density with age is normal but they want to get all people with reduced bone density onto them. I hear the ching of the cash register ...
In recent years the bisphosphonates in general have been in widespread use - since the mid 90s they have been used in increasing numbers of patients. That is the point at which post-marketing records start to indicate any increase in the downsides of a drug and now we are at over 20 years of widespread use. This is when the long term effects become obvious - providing there has been honest use of the yellow card (UK) or FDA (USA) reporting systems.
Before I spend half an hour writing about this I will use this link for the interim story:
which you will see was put up in 2008. There was already concern after 10+ years of their use. They mention animal studies and small studies. In the last 5 years a lot more work has been done that confirms the mention of microcracks forming brittle bone. And even in 2008 a respected source like Harvard Medical Scool was suggesting these drugs should be the LAST option considered.
We are in a situation where they are being used as the FIRST option, without any check of whether they are really required or not. All we ask is that a dexascan should be done before patients are started on bisphosphonates and the results of that taken into serious consideration. I had been on pred for about 3 months when I had my first dexascan, that is the recommendation from the British Society of Rheumatologists. The result was normal, t-scores of -1.3 or so, and I didn't take the AA I had been handed in a reflex action together with the pred. I had already discussed it with a different doctor and he agreed with my analysis then - we knew there were questions. Three years and 7 years later I had repeat dexascans, the one after 3 years was near enough the same as the first - albeit done on a different machine so not directly comparable but the last one wasn't significantly different and I still have a t-score of -1.5 at worst. No AA - and it wasn't needed at all.
We have had patients who have been told they must take AA, like me, with no need as it turned out and others who have been told the same DESPITE having clear contraindications for its use. That is why there has been considerable discussion about it and why people are apprehensive. The disquiet has not only been created here, people search the internet and find the horror stories. We have had 2 or 3 ladies on the forum in the past who have had broken leg bones that wouldn't heal as a result of using AA, one for only 18 months. There have been several who have lost teeth - very probably because of AA and many others whose dentists refuse to treat them and send them to hospital even for an extraction. Purely because of a history of taking AA. AA shouldn't be taken until all invasive dental work that may be required has been completed. And scrupulous dental hygiene is required for the duration of the treatment. Doctors DON'T tell patients that. Nor do they keep a check on patients vit D and calcium levels - unless they are right the AA doesn't work and I do know of patients who, after years of taking it still developed spinal fractures. In the case of one, the consultant told her that all those years of AA hadn't helped her at all. This was a few years ago - maybe it was the microcracks that led to her problems, I don't know. And we also know that doctors llie to patients - tell them their t-scores show osteoporosis when in fact they show osteopenia and often not even particularly marked osteopenia.
Loss of bone density with pred is NOT a foregone conclusion. It is said 40% of patients on pred will develop loss of bone density, 50% of the US population will do so anyway. The company marketed Fosamax as a wonder drug with no side effects that was safe for long term use and there would never be a hip fracture in elderly patients again, especially if you started using it at menopause which is when bone density loss usually starts (also not entirely true, many pre-menopausal women and men develop low bone density. Doctors learned that at a critical stage of their training and have perpetuated what I would consider a myth. They couldn't know it was safe for longterm use in a healthy population - there was no evidence. Previous use had been in a pathological condition, Paget's disease, even if it had been over many years, the factoid that was pounced on was "in use for 50 years". And to say it has no side effects is far from the truth.
Thanks PMRpro. I think I am a sort of retired pro too....but bow to your moderator status. I am probably way out of date. I do think the whole relationship with bone turnover, calcium and vit D metabolism and fracture risk is a very complex field. I don't think doctors usually lie to patients...they may not be as well informed in a particular field as expert patients. Research data is difficult to apply to an individual. I've found that myself, and with true side effects am quite prepared to stop a prescribed drug on my own initiative. (eg methotrexate and hydroxychloroquine) However, clinical decisions have to sometimes be made on the basis of risk and not actual proof, and risk is very hard to understand and explain both for the doctor and the patient....whether you use absolute risk (often low) or relative risk (often alarmingly high).
I have been advised to take a "bisphosphonate holiday" due to the NHS and the unknown factors you mention. However, I will get another BMD done next year based on my use of prednisone and strong family history of OP, and will go back on risedronate if necessary. I never took Fosamax as I had a history of hiatus hernia, also risedronate (Actonel) was considered better for the spine where my density was lowest. I now have wedge fractures and a severe scoliosis in my lumbar spine, which is inoperable. This makes a spinal dexa virtually useless, and it may have been caused by stopping the bisphosphonate for my "holiday". I'll never know....just cope with the pain instead.
By lie - I meant that we do know of doctors who have told patients their dexscan result shows osteoporosis - when the real figures were found it was a different story. And several patients have been told their bones will crumble if they don't start AA NOW. Which is patently not true.
If your bone density was so high then it is unlikely the holiday made the difference. But it IS possible the many years of bisphosphonate might have. But you will probably never know.
Sorry to hear about your spinal problems - horrible pain.
Hi PMRpro. I managed to miss this one somehow till now. Thank you for such a useful summing up plus the links. I think my rheumy has realised that there's no persuading me to change my mind, so she doesn't try. As I mentioned somewhere else, when I fell on 30th August, the main damage was a flesh wound to my left leg, but my left arm which took my weight when I fell, was just scraped and bruised. They x-rayed my leg and my arm but nothing was broken. I think if my osteoporosis was as advanced as has been hinted to me, I would have broken something.
Bone density isn't really a measure of fragility - people with normal bone density get breaks (most of the, actually) and others with low bone density don't. Big Pharma wants it to be linked though.
It's good that you have not had any side effects from the medication. Nevertheless they are very serious drugs and should not be taken without a proven need for them. I believe it more accurate to say that pred may cause bone thinning. In fact at the low doses most of us take for PMR after our first few weeks on pred the risks are much reduced and many people experience no more than the normal slow decline in bone density we expect with ageing.
I may have experienced some bone thinning in my early days on pred, especially as I didn't know I shouldn't take calcium at the same time as my pred dose. But I didn't get a DXA scan until I'd been on pred for about four months, the very time that it can have the greatest effect on bones, so I don't have a pre-pred baseline. My t-score at that time was -2. I did a lot of things to improve my bone density and a follow up scan a year later (on the same machine) showed my t-score was -1.6. I did not take any bone medications, just diet, a few supplements and quite a lot of weight bearing exercise (walking, Nordic walking, wearing a weighted walking vest).
Yet again one of those things we encounter with Chronic illness it's cheaper to give you the AA , " just in case" than send you for a Dexa Scan and allow you to make the right choices .
Doctors are very quick to try and push people to taper off steroids quicker than is appropriate for their Disease needs.
Yet they are more than happy to put us on two or more drugs like , AA, Statins , and PPIs as soon as we start Steroid Therapy , even though all the ' just in case' medications give us side effects that make us feel like a bomb has gone off in our bodies in those first few weeks of treatment.
Of course you have to make up your own mind....but...sorry... one needs to assess tthe chance of fracture ....not just bone density. Once a fracture has actually happened. ...the internal structure of the bone is destroyed and you can't put it back. Prednisone weakens the bony bridges whatever the dose and whatever the bone density. The penny pinching attitude of the NHS is that they don't allow preventative treatment not that they suggest treatment too quickly.
Unusually, I am repeating my screed from further up to go with this comment (which I hadn't seen or I would have replied here) so anyone happening on the discussion doesn't miss it. Because all it includes is important. Sorry if it is long.
"Not sure why everyone is so worried re bisphosonates ... they've been well tested for years now."
That isn't entirely true in terms of them being safe. Before Fosamax they were used for a relatively small patient population - and for their purpose you quite correct in feeling they are justified. I wouldn't argue with that either. However, the Fosamax marketing push has been to medicalise a normal situation - some loss of bone density with age is normal but they want to get all people with reduced bone density onto them. I hear the ching of the cash register ...
In recent years the bisphosphonates in general have been in widespread use - since the mid 90s they have been used in increasing numbers of patients. That is the point at which post-marketing records start to indicate any increase in the downsides of a drug and now we are at over 20 years of widespread use. This is when the long term effects become obvious - providing there has been honest use of the yellow card (UK) or FDA (USA) reporting systems.
Before I spend half an hour writing about this I will use this link for the interim story:
which you will see was put up in 2008. There was already concern after 10+ years of their use. They mention animal studies and small studies. In the last 5 years a lot more work has been done that confirms the mention of microcracks forming brittle bone. And even in 2008 a respected source like Harvard Medical Scool was suggesting these drugs should be the LAST option considered.
We are in a situation where they are being used as the FIRST option, without any check of whether they are really required or not. All we ask is that a dexascan should be done before patients are started on bisphosphonates and the results of that taken into serious consideration. I had been on pred for about 3 months when I had my first dexascan, that is the recommendation from the British Society of Rheumatologists. The result was normal, t-scores of -1.3 or so, and I didn't take the AA I had been handed in a reflex action together with the pred. I had already discussed it with a different doctor and he agreed with my analysis then - we knew there were questions. Three years and 7 years later I had repeat dexascans, the one after 3 years was near enough the same as the first - albeit done on a different machine so not directly comparable but the last one wasn't significantly different and I still have a t-score of -1.5 at worst. No AA - and it wasn't needed at all.
We have had patients who have been told they must take AA, like me, with no need as it turned out and others who have been told the same DESPITE having clear contraindications for its use. That is why there has been considerable discussion about it and why people are apprehensive. The disquiet has not only been created here, people search the internet and find the horror stories. We have had 2 or 3 ladies on the forum in the past who have had broken leg bones that wouldn't heal as a result of using AA, one for only 18 months. There have been several who have lost teeth - very probably because of AA and many others whose dentists refuse to treat them and send them to hospital even for an extraction. Purely because of a history of taking AA. AA shouldn't be taken until all invasive dental work that may be required has been completed. And scrupulous dental hygiene is required for the duration of the treatment. Doctors DON'T tell patients that. Nor do they keep a check on patients vit D and calcium levels - unless they are right the AA doesn't work and I do know of patients who, after years of taking it still developed spinal fractures. In the case of one, the consultant told her that all those years of AA hadn't helped her at all. This was a few years ago - maybe it was the microcracks that led to her problems, I don't know. And we also know that doctors llie to patients - tell them their t-scores show osteoporosis when in fact they show osteopenia and often not even particularly marked osteopenia.
Loss of bone density with pred is NOT a foregone conclusion. It is said 40% of patients on pred will develop loss of bone density, 50% of the US population will do so anyway. The company marketed Fosamax as a wonder drug with no side effects that was safe for long term use and there would never be a hip fracture in elderly patients again, especially if you started using it at menopause which is when bone density loss usually starts (also not entirely true, many pre-menopausal women and men develop low bone density. Doctors learned that at a critical stage of their training and have perpetuated what I would consider a myth. They couldn't know it was safe for longterm use in a healthy population - there was no evidence. Previous use had been in a pathological condition, Paget's disease, even if it had been over many years, the factoid that was pounced on was "in use for 50 years". And to say it has no side effects is far from the truth.
Established osteoporosis is NOT irrevesible as you have said, both Prolia and Forteo will be effective quickly and are not significantly different in adverse effects . And high bone density does not necessarily protect from fracture anyway - just as low bone density is not a guarantee you will break a bone. There are many other factors involved in fractures and they were already on the wane before Fosamax appeared. The measures you take there are mostly cheap or even free - better lighting, removal of trip hazards, maintaining MUSCLE tone (which is just as important as your bones) with some simple exercises, avoiding unnecessary medication load - polypharmacy is a major risk for falls, and a range of other approaches.
I'm not saying don't take bisphosphonates at all. I'm saying there is a lot more to it than taking a pill once a week or an infusion once or twice a year. These are the factors we present regularly here and as long as I am a member of the foum that will continue. You cannot make an informed decision without the information.
Doctors may not lie but they don't know everything and they are subject to misinformation and propaganda just as we all are. My doctor didn't lie to me, but she spoke from ignorance. She was sent the summary of my DXA scan, not the report, and it described me as having "low bone mass" which is the term they use here rather than osteopenia. They also, because of my other risk factors (pred and a previous fracture) recommended medication. So she said I had osteoporosis because that's what she believed from the summary. Getting my full report was a bit of a nightmare, shouldn't have been so difficult, nearly had to go the official access to information route, but I knew at once that my t-score was not osteoporosis and I still remember the weight which lifted from my shoulders; all that day I felt literally lighter and lighter after several months of believing I had OP. Doctors definitely need to learn more about this condition, and NOT from the drug companies. I noted how much more keen my doctor was for me to start medication after she went to an OP seminar. I've often wondered who sponsored that session!
And I can tell you, those peripheral measurements are unreliable. The local hospital was loaned one from somewhere. A lady was told it was fine - the dexascan said otherwise, she was severely osteoporitic where it mattered.
This article was published in 2009 - and someone was already worried about the long term effects. Ten years on we know she was right to be. If I needed a bisphosphonate then I would consider taking one. I won't take it "just in case" and I don't think anyone else should either.
Listening to the radio while doing this. Climate crisis dominating. Reminds me of when I was growing up and we were all terrified of nuclear war. I had bad dreams about it. We have, so far, averted that. But something like the climate changes, which we could largely have averted by changing our ways thirty years ago, makes our medical issues seem like nothing much.
Thanks again PMRpro. I value your input and this will be my last comment right now!!!
I personally think that my small scoliosis started when I was rock climbing years ago, (I felt it "go", and the pain which followed lasted 2-3 months typical of a small fracture) and that a tiny wedge gradually worsened over the years. The generalised osteoarthritis I also have...for which I have had 4 joint replacements, has also affected the spine, making the dexa levels inaccurate and falsely high. I don't think the scoliosis was related to bisphosphonates but clearly cant prove this.
My sister found her osteoporosis stopped responding to alendronate (no wonder drug indeed) and she was started on strontium before it went off the NHS list and has been the only drug that has held it. She has had several vertebral fractures and a wrist fracture so far. Each person is different I agree....she was reassured by an orthopaedic surgeon with her first fracture that her bones looked "fine" on X ray, and a BMD was unnecessary. She then wouldn't consider treatment until she had suffered several subsequent fractures. When,like me, one has several chronic illnesses one is trying to juggle, the vasculitis doesn't necessarily look the worst of the bunch.
If it hadn’t have been for this forum I would have just taken the AA my Rhuemy prescribed without question. On my last visit I asked for a dexa scan and he agreed. I wouldn’t have known what they were either. He still said I should take them. I haven’t. I haven’t even collected them from the surgery.
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