This article was posted on the Bone Health forum:
Thank you for the link I will read again later when my brain is engaged, it’s 4am here. Looks like a big con to me, interesting.
VINDICATED!!! I feel vindicated!! thank you HeronNS . do so love this!!!
Me too, I suspected it was not as good as “they” said. Took it a few times on the terrifying advice of a consultant then dumped it after some research.
So did I!
Thank you for posting this “sensible” article. It consolidates my view entirely.
Primary care promote these drugs with almost aggressive intensity. This really skews a balanced view. Why?
Thankyou for this post. It’s very hard when you’re under pressure to take bisphosphonates, especially when Drs scare you into the consequences of not taking them. I am thin, in my late seventies with osteoporosis as well as PMR, but nevertheless have refused bisphosphonates. The pressure alone, from doctors just adds to the worry. Don’t they read articles such as this, or is it an area of low interest?
Apparently ClarkB thinner people tend to suffer more than the larger ladies. The more weight you carry the stronger the bones will be.
Makes sense I suppose as weight bearing exercises are good for building strong bones.
I can’t put weight on! Would like arms with dimples instead of sticks! I am always eating too. I must start weight bearing exercises! My neighbour says, cans of beans. Walking has always been my sole exercise. Have always been very keen. However since getting PMR, I tire quickly and can only manage a mile or so on a good day, and am then exhausted. Hated PE and games at school. I haven’t tried yoga- in other words, I am my own worst enemy.
I'm not very large either, I just pipped the BMI when they did the weigh in.
I was told that walking is, in fact a weight bearing exercise, much better than cycling. I think that you are doing great.
My doctor did say at one appointment that I should get a back pack and fill it with bricks. I think that my hand bag is heavy enough.
I was the same with PE and games at school, I always tried to be goalie in hockey! When it came to Tennis in the Summer, I used to sunbathe!
I can’t drive anymore, and so always have a back pack. I certainly don’t need to fill it with bricks, as it feels like it is full of them already! I sprained? my leg/thigh last night rushing to the phone and am now hobbling- so much for my brisk walking yesterday. Couldn’t sleep for the pain. Now I wonder, walking or resting?
As for PE at school, I couldn’t leap over the ‘horse’, I struggled to scramble over it. At least I became a laughing stock, which was better than being shouted at by games mistress!
I find that my trekkers help me to walk faster once I get into the rhythm.
I would rest up a bit until your leg feels better.
That dreaded "Horse", all I could do was run up to it.
We have a lot in common, including the battle with doctors!....😕
Brilliant article, thanks for posting it.
Thank you HeronNS I have read it and copied It to my files.
Thank you so much for this. I feel indicated. I couldn't take Alendronic Acid because it played havoc with my oesophagus (felt more like sulphuric acid!). I was booked for an infusion but read about possible side effects and cancelled the appointment. I was then prescribed Risendronate Sodium as a substitute for AA, and took it for a couple of weeks. It certainly didn't burn me like the AA but I was unhappy taking it, so stopped. I really like my rheumy and hate it when she gives me stern looks, but I'm sticking with my decision. I instinctively don't trust this stuff.
Sorry I feel 'vindicated', not 'indicated'!
You can actually edit posts here - just click the "more" link. But I knew what you meant! I felt vindicated when I improved my t-scores without medication.
Thanks for the advice re editing. I didn't know that before.
Me too. I hate it when he frowns but my gut feeling is so strong
I won’t take AA, and told infusions were too expensive, but didn’t want them anyway! Sometimes I don’t think doctors consider other conditions- or don’t have time to look into your medical history. In 2009 a chest X-ray showed that my ‘lungs are hyperinflated in keeping with obstructive airways disease’. Last night in bed when I breathed in, there was an odd sound coming from my chest when I breathed out. Alendronic Acid is the last thing I want, but doctors still push it. It makes for scary reading when you look up scientific reports by the anti AA teams.
It annoys me that the NHS will pay for expensive meds like bisphosphonates which are dubious to say the least, but I have to pay myself if I decide to take AlgaeCal or buy a good quality weighted vest to improve my bone health. Yet surely these are better measures than dishing out treatments with such appalling possible side effects.
There was an article in the papers yesterday that older people should start weight lifting and take protein powders. Perhaps the weights will be on the NHS.
Yuck. Am I allowed to eat cheese instead of a protein powder? Those supplementary foods are full of GMOs and artificial stuff aren't they? At least the ones I've read the labels for. Maybe "they" are trying to kill us off faster.
I had never heard of protein powder until yesterday. I don’t know anyone who uses them either. Are they for athletes?
Didn't note the bit about protein powders - did see the weight lifting though. Yes - the stuff bunnies use for body building. Which is strange because too much protein actually achieves the opposite. Like Heron, I'll stick to cheese. Unlike Heron I'll add steak and fish...
Because I've become so thin I had briefly investigated some sort of food supplement, not really a protein powder, which is supposed to improve nutritional status especially in the elderly, but the list of ingredients really put me off, plus in North America if a product doesn't have a verified organic or no GM label it almost certainly is manufactured from GM crops.
Did you hear 'Saturday Live' on Radio 4 on 17th November? One of the guests was Dr Catherine Walter who is a weightlifter in her 70s. She has the bone density of a 20-year old and was inspiring - although I couldn't achieve what she has managed, she made me feel that I should make some sort of effort. It's on the IPlayer here:
Yes, I even mentioned it on this forum. She had osteoarthritis as well as being a weightlifter!
Sorry. I must have missed that post. That whole episode of 'Saturday Live' was very good.
I never mentioned the programme so that was probably why.
AA isn't particularly expensive, £50 a year or so.
Ah that might explain why they love it so much. False economy if the side effects end up in lots of operations and extra treatments.
I don't think it is that bad - but when it does go wrong, it goes wrong!
Thanks Heron, just had a dexa scan, now I'm armed and ready for the results. Might give a copy to the dentist as well.
Thank you so much. Haven’t read it yet but will. Bless your heart xxxx
Just read it. Oh Heron. What a disgrace. I am so angry and frustrated. Poor women who have been persuaded to have these drugs. I was a victim of this with my “ depression “. Which didn’t respond to any of the damn pills. I got so sick from side effects. Then a new doctor tried talking me through the trauma I suffered as a kid. One year later I was completely well. No pills needed. I am highly reluctant to take anything now. I’ve had more bad reactions than I can remember. I feel violated. Xxxxx
Hope you see my long reply xxx
You note in the article we see mention of piglette's favourite drug company!
On a line by itself!!
Thank you HeronNS! So good to read a 'bigger picture.'
I have just found this. Whatever made any doctor think that taking bisphosphonates for more than a year or two to help with a dire condition was a good idea?
Very interesting, thanks HeronNS.
When the hospital wrote and told my doctor that I should be taking AA for osteopenia he said that he wasn't going to push me on this drug as he had a patient who had recently been diagnosed with bisphosphonate-induced osteonecrosis.
Of course they say that this is very rare!!
Wow! Glad I ditched it. 😫
Thank you for posting this information Heron.
Thank you Heron, just in time as having my next dexa in the new year.
Many thanks for posting this very interesting article. I think I will print it off and give to me my GP who has marked my medical records as a “Non compliant patient” because I declined his prescription for AA and informed him that I would prefer to try natural methods such as diet and exercise.
OMG how do you know your medical records have been marked? I have arguments with my GP about AA and think I have won and the whole thing is then repeated the next time I talk to him, like Groundhog Day. I am sure my records have been marked then.
Hi Piglette. I use the practices online services. Logging in one day to order a repeat prescription I noticed in my “patient profile” that my records had been marked as “ non compliant”. Using the online appointment service I immediately made an appointment for a telephone discussion. They seem to be the only appointments you can get these days. I questioned the GP about this entry on my records. He told me that the entry had been made because of my refusal to take the AA and it had nothing to do with him and that it was the company who manage their online system who had made this entry. I think he very much insulted my intelligence. How on earth can a software company decide who is compliant or non compliant unless given that opinion from a medically qualified person. Since then I no longer make appointments with the GP but with the practice nurse who not only seems to be much better educated about PMR but is much more willing to accept that I do have a second brain cell and capable of making mutually acceptable decisions about my health and treatment.
I feel for you, Groundhog days are difficult enough to contend with at the best of times and health but in the middle of this PMR journey they can very quickly become extremely draining. Reminds me of the lovely spoons theory. There really is not enough spoons left to waste on those that will not listen. Keep well, or at least as well as you can.
That is interesting. I have the on-line service and looking through found I was supposed to have chronic kidney disease stage 3, diagnosed about three years ago. No one had told me.
Oh wow, i bet that came as a surprise to you. I take it you will be having a discussion with your GP about that.
I suppose the doctors are to some extent influenced by people like me. In spite of taking alendronic acid and now residronate for nearly 3 years this spring agonising back pain was diagnosed as 2 compression fractures, since then I have broken 2 ribs, god knows how - I don't.
This is a life changing illness, far more so than GCA PMR.
And they say it might have been worse if I hadn't taken AA etc.
All the GP s offer are powerful pain killers which have side effects far worse than the bisphonates. The NHS in our area couldn't organise a dexa scan before I had the fractures and I like to think I might have been more careful had I known I had osteoporosis, but as I have already said I don't know how I broke my ribs in spite of being very careful not to lift or twist or cough or anything.
Now I have a tooth causing trouble and my very nice dentist won't risk a root canal so I have to go to ENT at the hospital.
So while I'm sure many people take bisphonates who don't need them, how do the doctors know which are the ones that do?
"And they say it might have been worse if I hadn't taken AA etc"
They can't know. There are 2 obvious conclusions to be drawn first: one is that your calcium/vit D levels may not have been good enough and if they are deficient, the AA doesn't work. That is a pre-requisite: they are to be checked and put right if not. The second is that the bisphosphonates themselves caused the problem as it is now known due to recent research that they lead to the formation of fine cracks in the bones which make them more likely to fracture.
Does this include AA do you think. It is not necessary to take.
I saw a play a long time ago about the young women who got 'phossy jaw' because they worked in a match factory. It was harrowing. I wonder how the pharmaceutical companies dare promote something that can have such dire consequences and why so many highly intelligent doctors go along with them.
I heard a programme on the radio about phossy jaw recently, they were using phosphorus to make the matches and it took about five years for the whole jaw to sort of become rotten. There was an article in a Dentistry magazine several years ago entitled “the return of the dreaded phossy jaw” it was talking about bisphosphonates. I think dentists seem more aware than doctors.
Thank you for this, HeronNS. I was diagnosed with osteoporosis 8 months after starting pred. My GP persuaded me to take sodium risedronate, which I have been taking for almost 2 years. I am due for a repeat DEXA scan in January and had already decided that whatever it shows, I'm coming off Risedronate then!
I have a problem with (the remains of) a tooth which was crowned over 30 years ago and my dentist is having to think what to do about it.
My tooth problem is more than the risedronate, apparently the osteoporosis is a problem as are the immunosuppressents, pred and azathioprine. I said I didn't want to stop the azathioprine as it seems to be helping me off the pred and was told that the other things were also a problem so hoping the tooth settles down!
So while the side effects of bisphonates are scary the knowledge that the pred is weakening my bones all the time and I can't stop taking it are worse. I wouldn't wish this on anyone.
I was at my highest dose of pred during the year between two consecutive DXA scans when I improved my t-scores. I do not take any other medications, only a few supplements. I believe the Vitamin K2 I take is very helpful for the jaw and consequently the health and stability of teeth.
Is there a direct relation between t score and fracture? I think there is a need for research. My t score for spine last april was -3.1. I shall press for another dexa next april. I did have vit k level tested last summer and it was ok. I can't help thinking more monitoring would benefit us all - rather tha blanket prescribing it would be nice if ones treatment was tailored.
I have queried the bisphonates at regular intervals and have always got a very definite yes from local rheumatologists. I don't know if they are bossy or that old thing the clinical impression made them think I was the sort to have trouble! How common is osteoporosis with fractures among gca patients on long term steroids?
Was it Vitamin K1 or Vitamin K2? They are both serve important functions in the body but it is Vitamin K2 which directs calcium into the bones. Most of us eating a modern western diet are going to be deficient in this because of the ways the animals in our diet are fed. Medical people are generally ignorant about Vitamin K2. Even my daughter who is a registered dietitian knew nothing about it until I told her - and then she made sure she read up on it.
I think the t-score is just a very rough measure as there are so many factors to consider, not least of which is the body type of the individual. You'd never expect a person from a slender "tribe" so to speak to have the same bone density as a person from a larger boned population group yet I think within various countries the t-score is one size fits all, even in places with a very varied population. The t-score gives us no information whatever as to how strong or flexible the bone is. I've also learned that the presence of changes from osteoarthritis can give an inaccurate measurement, showing that a vertebra is actually more "dense" than it really is, for example.
My doctor wanted me to take alendronic acid as a preventative measure. I insisted on the DXA scan first. When it showed "osteopenia" she urged me to take it. I said no. She was more insistent after she had attended an osteoporosis workshop. I still said no, and she never raised it again. However, when I had a follow up DXA scan one year later which showed a fairly significant improvement she asked me how I did it! (Yes, same machine.)
I see that vit k and calcium uptake and gut health are all possibly connected.
A report in the pmrgcauk newsletter today of an italian study that people with pmr were more likely to have diverticulitis had struck a chord as I had to have surgery for it about 8 yrs ago. I have had weird gut problems, food intolerances ever since. So maybe there is something in the theory that gut bactrtia imbalances are involved in autoimmune illnesses.
I am aware that an association does not necessarily mean a causal relationship.
I shall ask doctors about vit k supplements, just in case there is some contraindication.
The only time in my life I've had particular gut problems was on two or three occasions during the year I was undiagnosed with PMR. I'd say they were related, but the gut problems were not causing the PMR but were somehow both related to a larger issue which included them both.
I very much doubt that you will get Vitamin K2 supplements covered. As I said, the doctors seem not to know much about it. They do not seem able to understand that Vitamin K1 and K2 are very different.
I don't mind paying, I just want to be sure they would mix with the cocktail of medications I take, 10 at last count!
It was one of the experts on gca that queried vit k levels last year so we can only hope the idea trickles down to rheumies in general!
Vitamin K2 is nutrition, not medication. You CAN get some from food, but maybe not enough - unless you can get natto, the Japanese fermented soy which is, actually, the source for the supplements. We used to get K2 from grass fed (never grain fed) animals: meat and dairy. There is also some in fermented foods and our gut makes a very small amount. Unless you are on a warfarin type blood thinner I expect you'll be given the green light, and even at that K2 does not have as much of an effect on the blood as K1.
I am probably in agreement with you about meat and dairy. I don't eat dairy except for sheeps cheese because it gives me indigestion and I don't like the way dairy cows are kept, and half my family work in agriculture!! I do eat a wild game (legal!) about twice a week and organic chicken when I can afford it, presumably wild venison is grass fed. What bothers me is if my gut isn't working properly wlii eating the right foods and supplements make any difference?
As you can see I may be getting a bit obsessive here!!
No there is NO relationship between t-score and fracture - most people who have fractures have a normal bone density. Many people with osteoporosis never have fractures - there are a lot of other risks that are far more significant than bone density.
I'd be asking whether a bisphosphonate was the right drug for you - it doesn't necessarily improve bone density, it may prevent it deteriorating further PROVIDED your calcium and vit D is adequate and bone is continuing to be built, which isn't certain. Forteo is the only drug that actively builds bone.
But, out of interest, is your calcium in normal range? Is it ever checked?
Yes and yes, I take the adcal d dutifully. I asked rheumy whether that was sufficient and she said if anything it was more than I needed.
I think the gp was trying to cheer me up when she said it might have been worse if I hadn't taken AA etc.
I was going to ask them about Forteo but the tooth problem has intervened. I am on some list somewhere for an infusion but I don't think it was going to be Forteo. GP and dentist thought I should put it off anyway.
I still think some of this might have been avoided if I had had a dexa scan early in the pred treatment. The trouble with the NHS is that you can't pay for something they can't afford, so you have to find out for yourself. A dexa scan is not particularly pricey, anyway I save a !ot of money because I can't stand up for more than about 3/4 hr at a time, going out and going on holiday are out of the question!
"I still think some of this might have been avoided if I had had a dexa scan early in the pred treatment."
Absolutely - then you know if it WAS the pred or there anyway.
There are places in the UK where you can have a dexascan done and pay and some are not horrendous prices (though given the claimed cost of a night out in the UK these days, none of them are that extortionate!). Southampton is about £70 now I think, it was less.
Great article. Thank you for sharing.
Thanks Heron for taking the time to post the article. I took AA for 18 months and then stopped as it gave me terrible bloating. How I wish I hadn’t been talked into it. Very scary. X
How did your bones fare?
Reassuring article Heron, thanks again for your regular input on this subject.
Thank you for posting this article HeronNS. Very reassuring to know that not using drug therapy immediately after diagnosis of Osteoporosis is the right thing to do.
Although as you know it is important to do something - and as I have found the "natural" way does help. As long as there is no medical condition (other than possibly your pred or another medication) causing the bone thinning, then it is pretty much proven people can improve their bones. And I was able to improve my bone density even when my pred dose was above 5 mg during the year between my two DXA scans.
Very interesting. Thank you for posting this article.
Big Pharma are dangerous would like every old lady in the world to be on AA or something more expensive. But a word of caution, the article appears to be an unreferenced opinion piece by a GP in Birmingham, Alabama. It is not a scientific paper in a peer reviewed publication. I don't know why I should believe him more than my GP or Dr Dasgupta and the other authors of the the guidelines on the PMRGCA website.
" Bisphosphonate with calcium and vitamin D
DEXA not required
in the over 65's.
The NICE guidelines on bone protection are in keeping with this.
Major fractures or uncommon but can be devastating.
Prevention is better than cure and I'm going to continue AA.
It is the DEXA not required bit I disagree with most. I know 2 ladies whose BMD is better than mine, both are over 80 now and one had PMR and pred for a total of 8 years, the other GCA and high doses for 5 years. Neither used AA. I had been on pred for over 7 years at my last DEXA and I am now well over 65 - my BMD is fine. No AA.
In my bookmarks on my computer I have a load of articles, many of them from medical institutions, which agree with the conclusions in the article. I found the article a succinct statement of what has been known for some time about the dangers of the osteoporosis drugs which is why I thought it worth posting here. Everyone is free to make their own decisions based on what is right for them, but I think too many people are basing those decisions on incomplete information. For example, it seems it was known for some time that discontinuing Prolia was implicated in rebound osteoporosis, but it wasn't until a newspaper published an article about it that the general population learned about what is for some people a very serious problem.
For example, as early as 2012 this study concluded that a maximum of three years of bisphosphonate treatment could prove slightly beneficial but beyond that the risks outweighed the benefits.
These decisions are always difficult and based on statistical evidence but I don't think anyone should refuse Alendronic Acid until they have read the NICE Guidelines.
This was updated in Feb 2017 so is fairly up to date.
Hip fractures are dangerous, and I would strongly consider anything that reduces the risk.
And on the same basis - no-one should take AA until it is proven it is required. If your bone density is in normal range - you don't need AA, you need to be monitored. Much of the evidence against has been found in the last 2 years so would not have been included in the NICE deliberations.
When I was diagnosed with osteoporosis, I was prescribed AA, but didn’t want to risk the side effects. I had breathing and swallowing problems and didn’t want to aggravate my throat. When I developed PMR a year ago I was told that I must take bisphosphonates but despite the horror stories of what will happen if I don’t, I haven’t taken them. I hate being put in this position. It wouldn’t be so bad if things were cut and dried, but everyone seems in a quandary over the medication and the way this illness affects people differently. It makes decision making more difficult!
Oral bisphosphonates are contraindicated for anyone with swallowing problems - and the horror stories relate to that quite often. Your doctors have to take that into consideration and not force the stuff on you - but the first thing to be done is a dexascan to see the baseline. Only about half of people lose bone density with pred - it is not inevitable and can also be helped without medication, just diet, supplements and exercise. But also - about half the population in the USA who don't take pred lose bone density. PPIs, which they hand out like sweeties along with pred and which are not supposed to be used long term, also cause loss of bone density. But they rarely mention that.
Thankyou for your reply PMRpro.
I had already lost bone density some years before having PMR and taking prednisone. I was therefore not happy to learn that steroids could cause bone density loss. Prior to taking steroids, my dexascan of 23 Nov 2016 read: BMD. TSCORE
Lumbar spine 0.775. -2.5
Total Hip. 0.677. -2.2
Femoral Neck 0.576. -2.5
9.6%decrease in BMD at hip, no change at previous scan in Jan 2005.
12 July 2018 scan
L Spine. 0.791 -2.3
Total Hip 0.65. -2.4
F Neck. 0.566. -2.5
Since 2016 scan, no significant change in bone density at lumbar spine but total hip decreased by 4%
Report says increased fracture risk. Consider treatment with an anti-resorptive agent, eg bisphosphonate if history of fracture or using steroids.
I’m anxious, obviously, to be off steroids as I will still be left with osteoporosis even then! My stubbornness still wants to avoid bisphosphonates, especially since my ‘obstructive airways disease’ report in 2009 (considered “ok”.) Nothing since then. I am a bit of a worrier, but am so ignorant about anything medical!
I think you have to look at it this way: you already have osteoporosis, immobility is a major risk factor for osteoporosis even if you are not on any medications and not being on pred when you have PMR will leave you very immobile if it is anything like I was. And the biggest risk factors for fractures when you have osteoporosis is not the bone density itself (whatever people try to claim) but falling. I don't know about you but when I had PMR without any pred I could trip over nothing! My balance was off, my feet dragged, I struggled even to step up onto the curb and going up and down steps/stairs that didn't have good handrails was terrifying.
Accept you need pred to manage the PMR and for as long as you need it - or you will be immobile and clumsy which will put you at risk just as much as the pred may. And accept that you do have a good reason to take bisphosphonates for at least a couple of years.
I am currently on 4/3 mg steroids. I still feel apprehensive about taking bisphosphonates. With my swallowing,breathing/out of breath problems +acid reflux It does make me more reluctant, especially given the side effects. I also have 3 monthly checks at the dentist as I have had gum and other tooth problems
Someone my sister knows had been on bisphosphonates for years and still managed to fall and fracture her leg.
Given my history I feel quite stressed by the whole thing, especially after the grim warning from one of the drs at my surgery.☹️
If you have swallowing problems then oral versions are contraindicated. But reading this
I have to ask why you are so reluctant and why you haven't had this explained to you? It may be a difficult read - but the discussion at the end seems easy enough. It does seem that COPD may add to the osteoporosis problems. And they do suggest using non-oral forms of bisphosphonates.
Thankyou for the article. I have read it briefly so far, and have copied it. I suppose I have been reluctant to take bisphosphonates due to the bad experiences of others, and the publicity surrounding them. My doctors don’t provide non-oral forms as they are too expensive.
In the past I have had a few falls, the last being in hospital, but no broken bones. I am seeing a doctor next week, so will discuss these issues in the available 10 minute slot!
"My doctors don’t provide non-oral forms as they are too expensive."
That is NOT an excuse for a patient for whom oral versions are contraindicated. A broken hip will cost them a lot more than an annual infusion. Medical negligence springs to mind...
Thankyou PMR pro. I appreciate your comments and will discuss with another doctor next week.
Very very interesting reading. My Lady Dr. wasn't very pleased when I told her I was coming off risdronate because all I read about this drug.
She said don't come crying to me when you get osterperosis. I'd been on this tablet for over 4 1/2 years. I had read an article in the Saga magazine from the saga Dr. as well, and she wouldn't listen to me, so I just did my own thing, as I still agree that Drs. don't know every thing and they don't all agree with one another.
I recently came down from 4mgs to 3. 1/2mgs and started to get a headache again, panicking as I was I went back up to 4 and even one day took 6mgs. The Dr. advised me to go back to 4mgs again and if the pain comes back try and forget it as your body has to get used to the drop. One of the ladies in this forum advised me to do the same thing and she was right, Really can't remember who she is, maybe she will reconize this letter a she is on a similar dose as me,
Thanks Heron. I love to see these arguments against bone sparing medications!
Thank you for this.
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