Hi
I have read some worrying posts on here about AA. I have been taking AA along with the other meds since September 2016 but have never had any scans. I'm thinking GP put me on AA because I have had two broken bones in the past. Should I ask for a scan? I don't have follow-ups for PMR just see a GP if I have a problem with anything else.
I think that a DEXA scan is a good idea for all of us. At least then you will see if you are at imminent risk of osteoporosis. The latest reports on fractures with AA is news to us all. I dreaded it without that. Talk to your doctor, bring her/ his attention to the link with fractures. Don't do anything hasty without qualified medical advice. Good luck!
Thank you for your reply , I am plucking up courage to see GP for scan and going to ask for referral to Dr Mackie. X
Hi Marlenec 🌺
Most GPs put you on AA & Calcium/Vit D when they start the Prednisolone, as do most Rheumatologist's, I think they should do the DEXA Scan first but there's no harm asking for one now.
Mrs N x
The BSR recommendations for management of PMR say a dexascan should be done within the first few months to get a baseline. Women under 65 should be given calcium and vit D supplements until there is evidence anything stronger is required - but it is perfectly possible to increase bone density naturally without drugs. HeronNS is the resident expert there!
As for broken bones in the past - how and when? I had had a broken leg - but not because my bone density was low. There is having a history of broken bones and having a history of broken bones!
I would be asking for a dexascan - if you are on pred it is a risk factor but it doesn't mean you need AA. As I'm sure you will have read - I was offered AA, took 4 tablets and stopped. In 8 years on pred my bone density has gone down marginally and is still well in an acceptable range. I could have been taking AA for nothing all that time.
Hi Marlenec,
No point in taking an extra drug if not required, but you do need a DEXA scan to confirm that, and as others have said don't just stop the AA until you've talked to doctor.
I needed and took AA for 4 years without any problems, but maybe I'm just one of the lucky people that didn't have problems.
Thank you, yes I will ask for a scan.
My personal opinion is that no one should ever be put on any of the osteoporosis medications without as much evidence as possible that they really need something like that. A history of fractures is one major risk factor and will be important in making the decision but as PMRpro says there are different kinds of fracture history, and not all broken bones can be attributed to "fragility". What caused your fractures? Yes, Marlenec, don't just ask for a scan, insist on having one. PMRpro has managed years on pred with no bone issues. I did in fact have "bone thinning" but diet, supplements and exercise, no drugs, are sorting that. I had a broken bone (tibial plateau) about three years ago. I've always disputed it was a fragility fracture when my risk of fracture was being calculated, as my leg was severely twisted when I put my weight onto an irregular icy surface. In the big picture it was a good thing the tibia snapped, and was not displaced, rather than tendons and ligaments being torn off bone. It was definitely a major trauma, which does not fit the definition of "fragility fracture" when a bone breaks from something like a simple fall from a standing position. What kind of accident caused your fractures, and which bones were broken?
Hi Heron Ns
Thank you for your help.
I slipped on ice and broke my ankle about 15 years ago, was in pot for usual 6 weeks, no problems. About 10 years ago had broken big toe when a gas engineer dropped a radiator on my foot. 3 years ago didn't see a step and chipped ankle bone, tore ligaments, wore black boot for 6 weeks.
All good reasons for a break. That sort of history is immaterial - if there was trauma involved it is probably OK. And what happened 15 years is irrelevant unless they found signs of OP then. Which it doesn't appear they did.
Hope you told the gas engineer what you thought of him!
I certainly did!
At a "falls clinic" I attended last year we were specifically told that a broken bone in foot or hand didn't count as they are such small bones and vulnerable no matter who you are. None of your incidents count as "fragility" I'd say. (Fragility is when a bone breaks for no good reason, like a fall from standing height, or a spontaneous spinal compression fracture.) So the other major risk factors include steroid therapy, age, body type (if you are small you are more at risk than if you are large, so say the experts, but there must be a reason why the criteria for diagnosing osteoporosis actually vary according to the dominant body type of a particular country).
Bone density doesn't equate to bone health (flexibility for example). Otherwise wouldn't tiny women be breaking bones all the time?
The lower your pred dose the lower your risk, but there is evidence that pred does interfere with proper bone remodelling as low as 5 mg, and probably even less. And anything we do to improve our bones is a lifetime commitment.
"Bone density doesn't equate to bone health (flexibility for example)!
Which is probably why they are finding cracks in AA therapy...
This is such interesting reading HeronNS. I have never been offered a Dexa scan but my rheumy told me AA is a must alongside the pred. I have always been worried about taking the AA but as I also have osteoarthritis of the hip I continue taking it hoping it may help with the hip as well. What do you think to this ? I have been on Pred and AA just over two years.
I have never heard that bisphosphonates have any benefit for osteoarthritis, and research generally doesn't seem to support speculation that they help with arthritic pain. They work by preventing older bone from being reabsorbed, as it usually is in bone remodelling, so that the bone building cells gain an advantage. The problem with this is eventually new bone is being built on an old matrix, and this is when the therapy loses any advantage it may have given you in avoiding fractures as the old matrix becomes brittle. It's being recommended more and more that AA and related meds should only be given for two to five years before being discontinued in a "drug holiday".
What rubbish some rheumies talk, it is like saying alcohol is a must when you have a headache. As Heron says AA is for bone density not osteoarthritis. I would ask for a Dexa scan, as it is recommended with PMR and steroids.
I have always listened very carefully to my Rheumie and been a very good girl in taking all my tablets regularly. I trusted her word. However since joining this site I have started to realise she has a set plan for all her patients regardless of the patients ongoing pain.....to get us off the Pred as soon as possible !! I came off the pred on her say so and 2 months later needed to go back on them again because of a flare up and more pain than ever. So I am still taking AA but will insist on a Dexa scan to see if I really need it. Especially now that I know from you and Heron it does nothing to help osteoarthritis. Thanks.
And hopefully you are now being allowed to taper pred according to your symptoms, not according to a doctor's preset plan? Inducing relapse or flare through rapid taper or too soon withdrawal really only results in a higher total lifetime dose of pred, and, as PMRpro says, "it isn't slow if it works".
Absolutely....I feel more in control now. I will only reduce if I feel the time is right. Thanks for helping me along this slow painful journey.
Sorry Marlene,
But I just had a good laugh at your mishaps.
You sure do sound like your accident prone ! Not funny I know but it's the way you said it.
I asked my Doctor last year for the Dexa scan and he phoned hospital and booked me in for the week after !
When the bad results came through he said to me " Good job WE thought about the scan " !!!! 😂
All of us on prednisoline need that scan !!
I
Good luck x
I'd far rather have a broken bone than damaged tendons or ligaments!
Thank you for your support PMRpro. I have started your dead slow method reducing from 9mg to 8 mg this week. So far so good!
Many thanks.
Erm...sorry if it sound silly but can AA cause plantar fasciitis or at least symptoms of it?
Hi marlenec- as others have said in reply, it's better to get a DEXA scan done before embarking on a long course of AA. I've been on AA since diagnosis a year ago and decided to approach my GP for a scan request - somewhat to my surprise, he readily agreed! I don't think that this would've been suggested by him tho' and it seems to be yet another indication that we PMR patients have to make the running...... Anyway, just go for it and don't take 'No' for an answer!
Best Wishes
Hi Rokerman
Thank you for your reply. We have new system at dr surgery now- online request instead of appointment , so l have requested dexa scan and referral to Dr Mackie. Easier than face to face!
I think you do need to follow that up to be sure they understand you want to see Dr Mackie - and no-one else's team.
Well - if I want a 'face-to-face', I more or less have to walk up to the surgery - the 'phone lines go into meltdown at 08:30! Consequently, I usually opt for a telephone consultation and (so far) have managed to get what I want!
Good Luck!
Thanks Rokerman - yes I know what you mean about appointments - our surgery has just changed back to phoning - for last few years we had to get to surgery at 7am to queue for appointment for that day and they are usually all gone by 8.30am. Then you have to queue again next day, and keep on until you get appointment. Now we can ring again but as there are nearly 15,000 patients at our surgery and 7 doctors not much hope - this is why they now have on-line system. Unfortunately many elderly are not on-line.
I am left to ask why GPs in the UK have SUCH a problem. Here, very few GPs use an appointment system - and many of them work single handed, not even receptionists quite often. There is a newly introduced limit of 1,500 patients but currently many have over 2,000 for historical and locality reasons. But equally - we see a doctor the same day more often than not. We turn up and wait for the single surgery a day - how old-fashioned I hear you say! Arrive before the door is closed - and you will be seen today. This discourages people who should be asking the pharmacy for advice first or the worried well.
But the biggest difference is that you get however much time you need - a half hour is not unusual. But everything is dealt with in one go, you don't turn up again for some time. There is a massive waste of time between patients in the changeover - that is minimised. It encourages people to be self-sufficient. And if you turn up to A&E you will be charged 15 euros co-pay (the GP is free) unless you are ill enough to require admission (hospital in-patient treatment is free). In the winter the waits in ours make the 4 hour limit in the NHS look chickenfeed - we are a ski resort!
And for those unable to get to the surgery? The doctors do HOUSE CALLS. My GP even turns up unbidden to her bed-bound patients to check they are doing well.
There are co-pays for most things and a cashier in the lobby. However, prescriptions are only 2 euros and you get exemptions from the co-pays for most chronic illnesses or on income grounds - done automatically by a link to the inland Revenue computer. It's a shame there is this terror of co-pays in the NHS. I'm convinced it makes a difference to the abuse of the system. No-one turns up at A&E here for a sticking plaster/broken nail/aspirin!
That sounds better than my surgery. One week for a phone appointment. If you turn up at 7.30am you have to be on your last legs otherwise four weeks for a face to face appointment. I think my last face to face appointment was April last year. They don't want to refer you anymore as they have to apply for funding. They are happy if you suggest going privately though.
With regard to AA, I have taken on odd occasions, but not consistently.
Maybe an idea to visit a Rheumatologist, which I did privately, cost £180, but then referred to NHS for all bloods, and Bone Density Scan, and results from all these
gives you the answers. Good luck. Alun.B
i wonder why everyone's saying that AA should be taken only if there's ALREADY a problem (on scan etc) when AA is given to prevent this problem. and surely if you're young, pre menopausal and had total hysterectomy, the risk is too high, well, definite really
perhaps I'm missing something
You cannot take AA indefinitely - or you can, but it introduces risks of a lot of other nasty things. Not least, atypical fractures and there are 2 contributors on this forum who have had them requiring surgery and extended periods on crutches when they haven't healed well.
There is little definitive evidence to show that low bone density inevitably equals fractures or that high bone density does not. People with low bone density do not always have breaks, people with normal bone density still break bones. The figures they throw around as "osteoporosis" or "osteopenia" are not proven figures - they are taken from the distributions of bone density in the population and the lines drawn are purely arbitrary. There are many factors involved in patients falling and breaking bones - not just bone density. Fracture rates had been falling anyway but the manufacturers did a brilliant marketing job to persuade doctors that AA would mean no more hip fractures. It ain't necessarily so.
Recent work done in London has shown that after a couple of years the bone being formed under the influence of AA is different - it has fine cracks and seems to be brittle. The FDA recommended some time ago that bisphosphonates should not be used for more than 5 years without a therapeutic holiday and that duration has been reduced to 2-3 years. In the meantime it seems to me (and many others) that simply handing out AA as a preventative measure "just in case" is not a good idea. Determining the patient's baseline and then monitoring is a far better approach - and avoids a layer of medication and potential side effects. About half of the general population in the USA develops loss of bone density. It is said that 40% of steroid patients do so - so they very probably would have done so anyway.
My bone density was good when I started taking pred - in over 7 years on pred it had barely changed. I was handed AA at the outset, together with my pred - I'm very glad I decided not to take it (and a different GP agreed with me) as it has proven to be superfluous to requirements.
IF someone has already developed low bone density pre-pred then it may be good to give them AA. But if they haven't - why do so?
Thanks for such detailed response.
However point i made (or rather my oncologist) still stands- AA is to prevent density drop because after it happens its too late to do anything.
I've looked up this subject because of pain knees i develop after Avastin treatment which i cant blame fully on Avastin. Will see knees doctor soon but just wonder what else might be contributing to my pains.
I'm on AA for about 10 months only
I disagree with your oncologist's opinion - not least because it is perfectly possible to build bone naturally (HeronNS is the expert there) but there are also drugs that encourage new bone formation. But even with Prolia the bone density increases - something it rarely does with ordinary bisphosphonates.
I'm not saying NEVER use it - but it absolutely shouldn't be dished out like sweeties "just in case". For several reasons.
Yes, there is research proof that micronutrients and appropriate exercise can improve bone density, and I am not alone in showing this is possible, having improved my own bone density over the course of a year, after refusing alendronic acid. This should be the first line treatment when dealing with the possibility of steroid-induced bone thinning, not a serious drug which comes with its own set of significant side effects. I'd rather take my chances with Vitamin K2 and lots of walking than risk the side effects of bisphosphonates.
ncbi.nlm.nih.gov/pmc/articl...
hindawi.com/journals/jeph/2...
My problem isnt particularly steroids related although God knows I've had a bag and a half of them already. But by being thrown into early and harsh surgical menopause. I think mens body works differently on that level (I've not done proper research) but very low and still dropping levels of eastrogen will affect bones density badly.
I've aged 30 years in 6 months on hormonal level...few natural things will work on me plus further chemo and steroid in the future will keep ruining my bones.
Oh well... it's very good to listen to you and know there are possibly other oprions. I've heard of some injections etc from GP too but could do with a break from needles lol
Kx
Smilewave, did you get hormone replacement? I know you are facing some tough choices. If you do opt for OP meds it's possible that the most benefit will be from the first two years of taking them, and that gives you time to get started on all the "natural" things you can do, which at the very least may help your general health which is no bad thing.
Hi
I cant have hrt in fact i was on hormonal blocks like letrozole and tamoxifen to bring eastrogen down because my tumour was ER sensitive. They made me put on enormous amount of weight in record time 30kg in 12 months! So stopped them to lose all weight now.
I'm thinking if AA or other OP drug can help later if needed because pains i get are so severe it overweighs benefits of the drug. Meaning i cant move properly and exercise etc... after all i only have 15% chance to live for the next 3.5 years so my bones may not even start going thin lol
You know, no one else can make the decisions about what medications you should or should not take. But I can throw in two things which possibly may help: two of my friends have continued with their Western treatments for cancer but have added Chinese medicine. They both insist that the Chinese medicine gives them a much better quality of life by helping to alleviate many of the side effects of chemo and radiation. The other thing is that by introducing some of the foods which have been shown to improve bone health you will also be aiding your general health. I've become a firm believer in the value of fermented foods over he past year or so. If you haven't eaten many, or only know them through yogurt and possibly sauerkraut, there are many others. Kefir may be one of the best as it has a large range of helpful microorganisms. There are numerous types of fermented vegetables. Some cheeses are also good. So there is quite an array to choose from. Be sure to introduce them slowly in small quantities as your body will need time to adapt as your gut becomes repopulated.
Hi Heron,
I was diagnosed in early May with GCA and advised to take AA along with the Pred. I started at 60mg and am down to 20 mg (just today). I have taken about 4 AA tablets in that time because I really don't want anymore horrible drugs in my system. It is so cheering to hear your success story regarding building up your BMD without this awful drug.
May I ask your advice please? I had a preventative hysterectomy/oopherectomy 23 yrs ago at the age of 44 due to breast cancer. Hence, not a great deal of oestrogen present in my body from this time. I wasn't able to have HRT because of the breast cancer. I had a really nasty fall in the garden,maybe three years ago, down steps onto hard concrete, my hip taking all the impact. No broken bones thankfully, just nasty bruising. My DEXA scan from last month showed a reading of -1.7, not brilliant but not too bad, I understand. My Dr wants me to take AA but I'm wondering if it's really necessary. I'd rather address the problem without drugs as you have but am not sure what to take, besides the calcium and vit D. Also trying to do weight bearing exercises everyday.
Should I be taking vitamin K and other nutrients? Also do you incorporate lots of dairy in your diet or is this not necessary when eating loads of green veg and fruit? I thought I might self-fund a DEXA scan every 6 months or so to keep an eye on my BMD.
I would really appreciate your advice as you are so knowledgable on this subject.
Many thanks
There isn't a lot of point funding dexascans as often as that. You can only compare readings got from the same machine and even then it is such an inexact science that the changes in a short period of time don't necessarily show up. Once a year is probably enough and some doctors won't approve them more often than every 2 years for that reason.
If you didn't break with a fall like that - I wouldn't have thought there was much to worry about yet! After all, low density bones don't always break and people have fractures with so-called normal bone density!
Thanks for this information. I had no idea that the same machine had to be used to compare readings. I did ask my GP if it would be a good idea to repeat the scan in a year rather than wait for two and he didn't disagree - as long as I was self-funding. At least I now know that I have to go back to the same place and that six monthly scans would be a waste of money!
Thank you.
Your reading is in the osteopenia range and therefore, prednisone or not, bisphosphonates are really not recommended. I'd be tempted to go completely with diet, appropriate exercise and a few select supplements (calcium and D3 are always recommended, you should seriously consider adding K2 as well). I am not big on dairy, although I eat cheese, use milk in tea, and also consume yoghurt and kefir. Fermented foods like yogurt are good for your bones as well as the rest of you, but if you aren't used to them (fermented veggies, kombucha, etc) introduce them slowly in small quantities to let your body adapt. I eat a lot of kale and broccoli as well as other veggies.
My friend who helped me so much felt that the exercise that helped her the most was Nordic walking. I would add that the nutrient I think has been beneficial to me is K2, because I'm sure my diet was deficient in it.
I managed to get a second DXA scan within one year, although they tried to cancel the appointment on me. Next one is recommended for between 3 and 5 years. That really is all one needs.
My knowledge comes completely from reading a few books, talking to a friend who had a similar journey a few years before me, and continuing to read, and when questions arise checking the internet. I'm very careful not to accept statements made on websites trying to sell me things. There are indeed a couple of good websites about osteoporosis, but it's a very good idea to double check any claims. It is so easy to find good research on the internet now, articles published in journals, and information on websites maintained by medical organizations or medical schools.
Thanks so much for all this valuable info. Could you please explain why bisphosphonates are not recommended for anyone in the osteopenia range? I don't know anything about fermented veggies but will certainly investigate and give them a go - also the K2.
Basically because bone meds aren't necessary for that level of bone density. Look on a diagnosis of osteopenia as a heads up that it's time to start feeding your bones better, and giving them the kind of exercise which will make them stronger. There is not a single bone med which doesn't come with the possibility (I do not say certainty) of extremely serious side effects, so best to avoid them unless they really are necessary. Even people with osteoporosis can improve their bone density naturally - this has been proven through studies, although some doctors still don't seem to believe it. One of my friends was diagnosed with osteoporosis and through exercise and supplements moved into osteopenia range, and continues to improve (as shown by her follow up DXA scans).
hindawi.com/journals/jeph/2...
Thank you for your replyHeron NS. I really appreciate all the information you have shared - so helpful in helping me make important decisions.
Could I just ask you how much exercise (i.e. Walking) do you routinely do, are you at the gym everyday and does your diet include lots of fermented veg on a daily basis?
Thanks again and best wishes.
I eat a small amount of some kind of fermented food every day. Don't start with lots - your gut will rebel, it needs time to repopulate with the healthy microorganisms which help us metabolize our food! I bought a step counter when first diagnosed with PMR and put on prednisone, and try to walk 10,000 steps every day, this is all my activity, not just a dedicated walk. Not a fan of gyms. I do longstanding, as well as newer, physio exercises, and have also done a little yoga for many years, just in my own home. Since diagnosis I took up Nordic walking and Tai chi. When I remember I wear my weighted walking vest. 
Just thought you might be interested to know that today my GP refused a Dexa scan as she said they do not do them after 80. Rheumy insisted last year on a Kolendronic infusion as I could not take AA (this I will not agree to again). Had two very bad falls last year - no broken bones.
Hi Joat, what absolute twaddle from your GP. I assume the only reason can be costs. It is when you are older that you normally need a Dexascan.
A lot of doctors ASSUME that when you are over 65 you will have a degree of bone density loss. That is implicit in the BSR guidelines for management of PMR and GCA - patients under 65 should have a dexascan and be given calcium and vit D, alendronic acid if required. Patients over 65 should be given AA.
I take it that is because pre-dexascans they just assumed that all post-menopausal patients were going to crumble. Just like there was also a totally erroneous belief that men don't develop osteoporosis. Now there is no excuse and I know a few PMR/GCA patients with a very good bone density in their late 70s and early 80s. I will be 65 next week - and my bone density is perfectly OK.
There are all sorts of reasons for a very different picture to develop - not least we have probably been far more active for far longer and had better diets than our mothers and grandmothers. The number of hip fractures in the elderly had been reducing for some time before AA appeared on the scene - for all sorts of reasons. Without such clever marketing perhaps it would never have achieved the position it has.
Joat, I understand the osteoporosis drugs are not as effective for people over eighty. Probably whatever you do to keep yourself healthy in the way of nutrition and appropriate exercise is the best thing that you can do. These things also keep our whole body healthier, and there aren't any side effects! Sounds like, from your history, some therapy to improve your balance and prevent more falls might be in order. You don't want to keep tempting fate! Can you access Tai chi classes in your area? Also a good physiotherapist can offer suggestions.
Hi smilenwave, I understood that our bones are being regenerated constantly and it takes about ten years to replace the whole skeleton. This must mean we can improve our bone density I would have thought. In a trial done on AA, it seemed that after a while AA was stopping this regeneration which is why the time of taking it is limited. It was a maximum of five years but a maximum of two years seems to be quoted now too.
Smilenwave, what is happening with AA and the other drugs is that the osteoclasts, which remove old bone, are being suppressed. After a while this means that new bone is being laid on top of old bone. The process of bone removal and bone reconstruction is called bone remodelling. The healthiest way to promote good bone remodelling, where the osteoblasts (bone building cells) aren't overtaken by the osteoclasts (as they are when bone thinning occurs) is to manage whatever weightbearing exercise is appropriate for you and also provide the osteoblasts with the nutrition they need to make healthy new bone. Another problem with suppressing the osteoclasts is that they do have some role to play in our immune system, so a drug like denosumab which virtually poisons them is particularly problematic.
Thanks everyone this is a lot of good info.
I'm 38 after ovarian cancer and total hysterectomy which is too early for my age so although density scan showed all good after surgery (understandably!) Onc said it's better to avoid density problems rather than fixing it when (and it will happen definitely a lot sooner than naturally). I think perhaps its because of my age i should take it. Also I'm extremely limited with my physical abilities which alone can be result of AA side effects but I'm (was before i read you guys) scared to stop it.
I will discuss again with onc and knees doctor to see what they say. Or just stop and see if my condition inproves.
Thanks a lot again!
Kate
In cancer cases it is a very different matter, However - if AA doesn't suit you there are other options which may be better for you. It is by no means the only drug.
I've no idea if it suits me without quitting it for a while. And even then it might be all coincidence...nothing is simple or comes on its own with chemo and life changing surgery. That's why i want to limit anything i take and AA is the last one i take. Stopped Decal (? calcium +D3) and knees already feel better. God only knows! Haha
But at least I'm not too worried to try stop taking AA now!
Thank you
Good analysis - but being off it for a few months isn't going to leave you crumbling in a corner! And if they are that worried about your bone density - what I meant is there are other answers.
Alendronic acid & DEXA scan
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Goodbye Alendronic Acid
Alendronic Acid 70 mg
