Bit distraught. Got my dexa results today and it appears I have osteopenia throughout the lumber spine and total hip with osteoporosis of femoral neck.
Wish I'd taken the flipping alendronic acid now! What now? Is any of this reversible? Feeling very tearful, please help.
Hi artisam, I am so sorry, I can imagine how upsetting this must be. Don't beat yourself up, it is one of the most difficult decisions we need to make as AA can also bring its own problems. Did you have a baseline DEXA when you started the steroids?You could look into different options available, AA is not the only thing you could take. I hope Jinasc will be along soon as she knows about these things.
Doing everything you can to help yourself is also good; I've learned a lot from this post by Heron: healthunlocked.com/pmrgcauk...
I myself do lots of weight-bearing exercises, use a weighted west while running on my elliptical and, lately, I am thinking of taking up Nordic walking. I take a calcium supplement (the types recommended by Heron) and eat lots of green vegetables and more recently dairy.
If it helps, I can tell you that one of my aunts had early-onset severe osteoporosis in her 40s, and is now in her 70s and still going strong.
Thank you so much for that. I had no base line test unfortunately, so I have nothing to go on. I was surprised as I have a very calcium rich diet, but obviously it wasn't enough. I know weight bearing exercise is key and I will look into a weighted vest. Thanks for the advice xxx
Was your vitamin D level up to scratch? Lots of calcium is no good if vit D is low. My DEXA scan at the start showed osteopaenia but I was also found to have a very low vit D which had probably been the case for years. As you’ll find in the book we need all sorts of other micronutrients and as usual the public health message is over simplified as needs must when trying to deliver one to the masses. The online evaluation tool they used said I was just in the area for supplements only. That was 4 years ago. My next DEXA is soon so we’ll see what happened.
Just to add I’ve had four absolute cracker falls onto hard ground in the meantime, two smack onto a hip and one with a weight on me. No fractures so it isn’t necessarily the case that you snap like a twig but playing statistics is so difficult for the individual.
Almost all of us will have osteopenia of the spine at our age - but it is the degree that matters. What are your t-scores?
There are various drugs that will increase bone density - it isn't irreversible. But low bone density does not automatically mean fragile bones and there are a lot of things you can do to reduce the risk of breaking a hip - and they cost little and have no adverse effects.
These are my results. No sure how bad they are but I have an appointment booked to speak to my rheumy in a couple of weeks, I'm sure she'll fill me .
Your spine result is fine - and since your FRAX score for the hip is 4.1% it isn't horrendously above the 3% that is "acceptable" and is more than 95% chance of NOT having a fracture in the next 10 years. As I say, there are lots of ways to reduce the risk of falling and breaking a hip, most of them sensible precautions that cost little or nothing and have no side effects.
PS - and vit D is one of the things, having more than just an effect on calcium and the bones, it is also crucial for good muscle tone to help with balance. Veru useful stuff vit D as Snazzy says. And supplements are pretty essential living in the UK and at our age.
I can understand why you’re upset, but it’s not necessarily downhill from here. Did you have a before DEXA to prove it was the Pred and has got worse because of it or whether you had it already and it hasn’t deteriorated on Pred. You can get better bone health and it is worth striving for it even if you end up on AA. Try the book, Your Bones by Lara Pizzorno which shows how many different aspects there are to lifestyle and good bone health so there is more you can do than it seems right now.
Thank you for that. I'll give it a read. I know I'll get to grips with it all, just a blow when I thought things were going so well.
Hi Artisan, I responded to your post but it doesn’t indicate I responded to you, I don’t know why. But please see my reply below. Take care.
Thank you, I have read your post with interest and a little trepidation! Forewarned is forearmed as they say.Thank you again
Whatever you do, do not accept treatment with Prolia (Denosumab) injections, every 6 months. That drug should not be used anymore for osteoporosis. Yet, medics still push it! Try and find research papers written by Professor Olivier Lamy. When stopping Prolia you will get rebound fractures, fairly quickly. This has happened to me. When I had to stop it not a single doctor nor the osteoporosis consultant warned me! How shocking is that? Consequently I have now a fractured pelvis, sacral insufficiency and my L1 vertebra is compressed (L1 is the first lumbar vertebra as you might know). The pain has been extreme and on-going and I have lost my mobility, using a zimmerframe and walking sticks! So, please, don’t panic, I don’t indeed to worry you unnecessarily but to make you aware. Do your research and try keeping as fit as possible, good diet and exercising. I used to be very active, walking a lot, gardening, going to the gym, doing tai chi regularly… can’t do any of these activities now. Supplements as mentioned by other forum members are important too. Unfortunately, none of the drugs offered for osteoporosis are any good at all. The bones they help build up are porous and fragile. They break very easily, sometimes even during the treatment. In truth, as my new osteoporosis consultant said, there are no real treatments for osteoporosis yet. All treatments have similar debilitating side effects. However, sometimes when the risk of fractures is severe, we have little choice. I don’t think you’ve reached that stage yet, but you need to be watchful. What does your GP think? Have you seen an osteoporosis consultant? Best wishes. PS: have a look at Heron’s link. Sorry can’t remember it now.
They now are aware of the problem and that patients need to be kept on Prolia indefinitely or switched to bisphosphonates to avoid the rebound fractures. If you applied that logic to all drugs there would be an awful lot of them that would no longer be acceptable. Including pred.
I know this is an important treatment for your family member, but when there is an alternative denosumab really should not be used. There are suitable treatments for "run of the mill" osteoporosis in people who haven't any other serious conditions.
Absolutely right and common sense. When a drug causes so much damage it should be removed as a “treatment “ for osteoporosis. It is unethical to carry on prescribing it. Do no harm…. They only use the Hippocrates’ oath when convenient to refuse a treatment usually.
It's interesting that earlier concerns were that its effect on the immune system would cause most problems. I don't suppose anyone could foresee what withdrawal of the treatment would cause. But as you say, now we know, and it's use should be restricted to those for whom other treatments are not sufficient, with the understanding that they will then be on it for life.
I'm still upset with the advertising I saw in Canada where there is no mention of what it is really used for, only that it will keep you young and able to do everything you want to. I complained and apparently this advertising meets the standards. Actually advertising of pharmaceuticals in not really permitted in Canada, which may be why when they do have ads for them you are left to guess what condition they are actually to be used for!
There again, very good, lucid and helpful comments! Because I have autoimmune diseases one would have thought more prudence would have been shown to me. I totally understand your being upset about the damaging and so misleading adverts! I am upset and frankly angry to have been used as a human guinea pig without having been offered the choice. Prolia was used to treat some cancers, I understand. So many drugs cause more damage than they do good, especially when rushed through the process. We do need drugs but there’s a limit… people should be treated with respect.
Quite - but the argument that "When a drug causes so much damage it should be removed as a “treatment “ for osteoporosis" really doesn't wash. That would remove a lot of medications from the palette for many diseases. The question is always a balance of benefit and risk - and now the risks are known, the way in which it is used should be adjusted to reduce that risk. That is a totally different matter.
They may now be aware(have for a few years really) of the debilitating problems caused by Prolia BUT they keep pushing this dangerous drug onto patients. Ethically it should be withdrawn. I, like many others, can’t have biphosphonates. However, it appears all those so called osteoporosis treatments are similar in their outcome: once discontinued rebound fractures occur and the bones they rebuild are NOT strong bones but porous and of frail quality. People have even reported fractures while on the treatment. And friend of mine has.
Clearly there are no drugs that help rebuilding strong bones in patients having osteoporosis. It’s deceiving people to make them believe this is the case.
Of course it’s not easy for doctors to help in this case and that’s all the “treatments “ they are recommended to use. At times one has to go along… but it’s a difficult and very personal decision. Transparency about the drugs’ serious side effects is most important. Had I known then I wouldn’t have had anything to do with Prolia. I still had a chance then to up my exercise levels, etc. Too late now, have lost my independence. One has to live it to appreciate, I guess.
There are not rebound fractures with the bisphosphonates. However, I'm bowing out of this discussion
Point taken, my mistake. My friend had micro fractures in the cervical area while she was still on bisphosphonates.
You probably already know this, but for the benefit of those following this thread - What I understand about bisphosphonates is, unlike denosumab, they stay in your system indefinitely. So you would not expect "rebound" osteoporosis. What can happen though is if they are taken for long enough (and that could be as little as two or three years) the new bone is being laid over an increasingly aging and therefore more brittle matrix. Because bisphosphonates prevent old bone from being removed it allows bone density to increase! So the best use for bisphosphonates seems to be as a method for two or at most three years to allow the bone building cells (osteoblasts) to outdo the bone removing (or remodelling) cells (osteoclasts). Probably the best course of action is at the same time to begin to do all the so-called natural things we know work to maintain and often to increase bone density, so when the drug is discontinued a patient is already set on a path to further recovery. This won't work with Prolia because it works by a different mechanism to stop the osteoclasts from working, and that's why they rebound afterwards and work overtime as denosumab leaves the system.
Again a wonderful piece of information for all concerned! Thank you Heron NS …Yes, I must admit I had forgotten how bisphosphonates work. However, a friend had micro fractures in the cervical area while being on bisphosphonates… so not that great.
It has been discovered fairly recently that Prolia prevents the osteoclasts from working… and researchers have identified another group of bone cells they have named osteomorphs, apparently… I believe this was explained in an article “Better bones “? So the osteoclasts are building up, some transformed into osteomorphs , waiting for Prolia to be stopped and then… rebound fractures happen. That’s how I understood the mechanism works. Clearly, Denosumab has no right to be used for osteoporosis.
Well I have no use for any of those drugs but in a way I have the luxury of being able to have that attitude. What if I had tried all those things I've done over the past few years and they didn't work and I became more ill and frail? Would I be singing a different tune under those circumstances?
The problem I have is that so many people simply don't know there are alternatives. Look at how many people come on here and say, isn't there anything else except pred for PMR? I was certainly like that. But there really isn't. For osteoporosis, however, there are alternatives which should be fully discussed with patients, not just have the flavour of the month medication given to them because that's recommended by some body which doesn't know the particulars of an individual patient. I can't believe it's actually required by British doctors to put their patients who take pred for PMR onto a bisphosphonate, and a record is kept if a patient refuses, but those same patients are usually not offered a DXA scan beforehand, one is not required before prescribing the medication.
It would be best to be able not to take all those drugs, which help on one hand and often cause another problem on the other hand so you’re offered another drug to counteract the side effects of the first drug… and it goes on and on. Clearly, there is big money to be made in developing more drugs… We can’t quite live long (with the exception of course)/without some drugs. The point is the scientists and manufacturers should really spend more time before releasing drugs… they don’t, time is big money!
Honestly I would rather not take any drug but as you stipulated some illnesses have to be controlled by drugs and thank goodness we have that possibility when required. I had very little option with RA… not without side effects but I have always been told about possible life changing side effects. RA in itself IS life changing.
I wasn’t treated with the same clarity about Prolia!
Like you I find it difficult to understand how people seem to accept that only manufactured drugs will help them when there are natural ways to deal with some problems. People seem to accept being brainwashed with so many things nowadays… I fear the young generations won’t live as long as our generations… those days have gone it seems.
I have often found doctors/consultants to be quite arrogant in their very limited knowledge. When I told my previous rheumatologist that I couldn’t tolerate methotrexate anymore, telling her I wanted to come off it because it made me feel like my whole system, my liver especially, was poisoned. She nearly had a fit! What a behaviour! Oh yes, she knew it all, the ignorant woman, telling me that was impossible… “people tolerate it well”! All theory of course, and putting everyone in the same box, job ticking, nice and easy. I asked her if she had ever taken it …no of course! I am very aware many people are overwhelmed by their doctors… and dare not say anything that might upset them… that’s a big problem which encourages the medics’ self righteous , arrogant attitude. Doctors and patients must work as a team. Well, I stopped using methotrexate and within a few weeks I felt better, I could eat again and digest my food. This was taken in conjunction with a biologic for RA… apparently because it helped the biologic work better… I begged to differ and she agreed reluctantly that I could stop methotrexate but if my RA symptoms got worse then I would go back on methotrexate… I agreed, having no intention of ever going back! Surprising I had no increased symptoms, was actually feeling better and doing so many things… and that lasted for 14 years. I actually believe Prolia interfered with my biologic. It also created serious problems in my right jaw bone, much infection and then the biologic stopped working! Sorry such a long post but it describes how dangerous Denosumab is! Yet they’re still using it! WHY? It is truly worrying.
Unfortunately I read a long time ago that people in my generation were not likely to live as long as their parents because of exposure to radiation and chemicals in childhood. If this was the case obviously our parents were also exposed to bad stuff, especially tobacco, and there has been so much improvement in surgical interventions for many conditions, as well as the drugs some of which we know are problematic, that we are likely to live longer than our parents. (I've already lived significantly longer than either of my parents, but I have never been a smoker.) But as for our children, I don't know. I suspect it won't be the drug industry but more things like a corrupted food supply and the stresses of climate change which will have a major effect on life expectancy.
I think some efforts have been made to launch a class action suit against Prolia. I don't know if a law firm has ever agreed to take it on. You'd think with stories like yours, multiplied by hundreds of thousands, it would be a walk in the park to win, so what gives?
I do fear for my children (in their early 50s) but more so for my grandchildren (20, 21, 24, 25 and 15), the climate change is most concerning and as you said the food industry, overuse of antibiotics and hormones in many countries so unhealthy for people and extremely bad animal welfare and still the use of strong pesticides on plants, crops. Unfortunately the UK has just signed a trade contract with Australia. This is a disaster in the making because so many unhealthy foodstuffs are coming our way. Plus all the carbon footprints… So I expect there will be more health issues. That will have a major effect on life expectancy, that’s for sure. Bad food = bad health.I would like to see a class action suit against Prolia so that big pharmas can be kept on their toes. However they have so much money and connections in high places that it would be pretty tough and would take for ever. I would not live long enough to see the end of it but it would mean a great deal to know some kind of justice would eventually take place and give hope a similar situation would not happen again… There is so much corruption everywhere, money gives power and this leads to corruption. It has always been the case.
However I would like to know why Prolia is still used to destroy people’s lives, now that they know what the serious side effects are. Why are the medics still pushing this dreadful drug. The osteoporosis consultant was saying to me, last year during a telephone consultation, I should resume Prolia injections! Of course I turned that stupid suggestion down. What will it take to stop the use of Prolia?
When the evidence is overwhelming a company will settle out of court. Nothing doing yet, though:
I finally have grandchildren a girl, nearly 2 (haven't seen her since she was 4 months old) and a baby boy, nearby but not seen often because of lockdowns. Nowadays I have to hold my tongue and not express my worries about the future.
Thank you for the link. Will make a note. I am so so angry to have been treated so shabbily. Not sure I will see any results in my life time (75), but it would appease me to know Prolia manufacturers would be heavily fined and the nasty drug banned.No doubt you will see quite a change in your granddaughter when you next see her in the flesh. They grow so quickly at this stage of development. When will you be able to see her again? It’s good your little grandson lives closer to you and you can see him from time to time. I haven’t seen any of my family for so long… hoping my 24 years old grandson who works in London will be able to come up and stay with me for a week, soon… we both have had our 2 vaccines…. But it will depends on the situation with the delta variant which is quite active in the UK. Planes were allowed to land here from India… no restrictions and passengers then travelled on public transport infecting many other people. Such bad mismanagement…. Unbelievable.
I understand how you feel about expressing your worries about the future… Feel free to pm me if you feel like it.
Helpful info, thanks. I had a denusomab injection due to horrible affects of oral bone density meds and because my 98 year old mother has them (she had GCA at 85 - sailed through it). We moved house and the new GP moved her from aklasta infusions to denusomab, presumably for cost. I checked it out with osteoporosis nurse at Osteoporosis society before I let them switch my mum and she assured me both meds are fine! I'll keep mum on it given her age and frailty, and she doesn't seem to have any side effects. I'd already decided not to have another injection or any more such meds and this has made my mind up. I'm going to insist on a DEXA. Hopefully having just had it once won't be a problem...
Of course it’s always your educated and informed decision that matters. I believe having only one injection won’t be a problem, so just in time for you …Naturally, it depends on the severity of one’s osteoporosis. It’s like being between a rock and a hard place. You’re damned if you do and damned if you don’t. The risk of fractures are real but to have rebound fractures because of using a drug, without being warned beforehand by so called medics is appalling.
All medics pretend it’s fine to use such drugs… but once one starts one is on such drugs for ever it seems, although they do not really repair bones properly, very porous weak bones…. Not a treatment, it’s disappointing.
Unfortunately there are no real drugs to treat osteoporosis, as my new consultant agreed. Sometimes we have to bite the bullet … I have been offered another drug, a metabolic drug… injection every day for 2 years then onto another drug… What a prospect! I have not decided yet, having requested a bone turnover test and another DEXA scan to see what my present situation is.
The consultant agreed but had I not requested these they wouldn’t have been offered, so do insist on a dexa scan before deciding on anything.
I think it’s reasonable for your mother to carry on with Prolia, at her age and frailty.
Of course, I am sure you will keep an eye on your osteoporosis situation and you might have to decide on a course of treatment eventually. Do you have severe osteoporosis? I only had osteopenia when I was offered Prolia. There was no information regarding the rebound fractures at the time. It’s quite shocking big pharma use people as guinea pigs. At least they should make it clear they don’t know possible serious effects and leave it to individuals to decide to have the treatment or not, at least people would have been warned!
If you’re well enough then exercising, walking and diet plus certain supplements will help maintain bone strength when done regularly . This is not possible for me now, apart from the diet and supplements.
Feel free to pm me.
Good luck.
Given that it is no longer considered best practice to offer osteoporosis drugs to people with "only" osteopenia it's shocking that Prolia was the one offered. Of course they may have thought you had enough other risk factors that you needed medication, and I suppose at the time Prolia was considered a bit of a miracle drug? As you say, we now know better.
They keep coming out with new drugs, and I have to say if a newly approved drug comes out with a black box warning that it may possibly cause death, I'd be tempted not to be one of the guinea pigs but wait a few years and take one of the well known medications instead, if I needed something. The exception might be if I was going to die anyway and the new medication was a last resort. Even prednisone turned out not to be the magic wonder drug it seemed at first. Now we know how to manage it and its side effects. Why doctors aren't as afraid of something like denosumab or romosozumab (Evenity) as they are of pred is puzzling.
Indeed, I totally agree with you. People deserve respect from doctors. People deserve to be informed and then it’s up to each individual to decide what to do. “Doctors are not afraid of something like Denosumab or romosozumab as they are of pred is puzzling “…. YES! Perhaps it’s because they don’t have to take such drugs… so they’re ok… I also understand from someone who works with big pharma companies that often doctors receive a large bonus when using certain drugs… so corruption… My GP agreed about bonuses being offered on certain drugs, she didn’t specify but she blushed. I like her, at least she’s honest. This doesn’t help us thought.
"It’s quite shocking big pharma use people as guinea pigs"And exactly HOW do they then develop drugs and establish they are safe? Even after animal testing you cannot be sure the mechanism is the same in humans until you get to Phase 2 and later cliical trials. And a rare adverse effect may not occur during Phase 2 or even 3 when relatively limited numbers are involved or during the usual duration of a clinical trial. That is the purpose of Phase 4 post marketing monitoring.
People die in car accidents - cars have not been taken off the market.
One has a choice to buy a car or not to do so! I wasn’t warned I would be used as a human guinea pig! That is so wrong, so UNETHICAL. Had I been told they were still testing the safety of Prolia I would had refused. If you wish to be a guinea pig in full transparency then that’s fine, YOUR choice. I wasn’t given that choice and I very much object to that dishonest practice.
Not buying a car doesn't stop you being killed in a car accident - and the majority of A&E accidents are from DIY events - so do you then choose not to live in a house?
It is all about using the things in the best way.
Sorry but you’re going at a tangent here. Let’s be pragmatic rather than argumentative. Accidents will happen, irrespective. HOWEVER being conned into taking part in a medical trial without transparency is not acceptable and should be severely punished. This isn’t acceptable! Perhaps there is a big enough case for ALL the people who were treated in this unethical manner to seek legal justice. Not to be honestly informed is not only morally wrong but although frightening: here comes 1984!
I think I have exhausted this topic now.
You were not "being conned into taking part in a medical trial without transparency"
Once a drug is approved after Phase 3 clinical trials and extensive documentation it is no long "in clinical trials". It is being used - like all other drugs. However - there is still a reporting system for adverse events as there is for any drug indefinitely.
I was conned in the sense I was not told there “might” be serious side effects… At that time I couldn’t find any clear and useful information on Prolia. I was not aware of trials stages then… A doctor SHOULD have explained this to me and I would have had the choice to refuse, which I would have done. It’s very likely I would not have sustained the damage I have now because I was still very active physically, on a good diets etc, I didn’t have osteoporosis then but was told I would avoid getting it! Wow! Can’t believe I trusted that doctor…. Don’t anyone. Therefore I was truly conned! Reporting a problem is all very well BUT where does this leave me now, losing my independence because of a dangerous drug and not being informed properly? Reporting the problem is good for other patients but too late for me . How do I get my independence back, and suffer less pain? I am stuck… like many others. This should not have happened if doctors etc had any decency and a true sense of duty.
A class action might get you somewhere in terms of compensation - which I know IS no compensation. But you do have to accept that, at the time, it was offered in good faith, the FDA and other authorities had examined all the trial results and approved it. If it could be shown that there had been negligence in the clinical trials - which by then had been completed - then you have an argument.
But there are 2 sides to every story - my life has been turned upside down and my husband is in a similar situation to you. Never had Prolia before but had undiagnosed osteoporosis and slipped and fell, fracturing a vertebra.
It’s not so much the fact I want to take legal action against big pharma… but it’s high time people say”enough”.. yes, develop new drugs but only to help not to damage people more. Take time to assess new products, don’t rush because big money is attached to that and we know this is a factor unfortunately! Then everyone should be informed the products are still being tested (although have passed most important parameters) on humans for the first time perhaps. Give people the honest facts then each individual has been warned and may decide what to do. This behaviour needs to change. No one has any right to use drugs on vulnerable people to ‘satisfy’ their results, to see what is happening . Prolia’s disaster is life changing. Now I have to live this very difficult life until I die… I can’t really enjoy myself and this in the last years of my life, like many others who suffer from such a medical disaster! I feel robbed of my last good years, and no I am not looking for pity! Not the type. The real question is: WHY have they not removed Prolia for the treatment of osteoporosis?? Money making! Such corruption… total lack of ethics, that’s the most worrying problem. People must not accept to be treated like simpletons… with lack of respect. We, patients deserve clarity and respect and in turn we can respect scientists… Yes, we need scientists but they need to really understand that good ethical behaviour is most important.
Sorry - they cannot be used in the general population UNTIL the FDA and other authorities have seen and assessed the documentation for the clinical trials. That usually is after at least 3-4 years of trials - but no trials in the world will find the adverse effects that take years to emerge. If you make it too hard, there will be NO new medications. And that includes antibiotics, it is already so expensive to develop new drugs that almost none are being developed. Hence the desperation to prevent them being used unnecessarily because of resistance being developed.
Whatever the problems when relatively small numbers of people suffer nasty effects, can you imagine a world without antibiotics? Vaccines? It will be a permanent first year of Covid with no treatments and no vaccines - that is what it was pre-Big Pharma.
I understand the procedure involved in developing new drugs. However, there is no excuse for not informing people about possible life changing side effects of drugs they are forcing on vulnerable people, in fact it’s both immoral and unethical to use people as human guinea pigs. It’s similar to Eugenics procedure. That is totally unacceptable in our century. They should explain they don’t know what effects might be… and individuals would decide whether to proceed or not with the use of the drugs. I would not have agreed and would be able to enjoy living a fairly normal life now. Surely, scientists are aware that diseases evolve… and therefore be able to plan ahead for new drugs, not wait until a crisis happens - as is the case with the coronavirus now, yet they knew of the strong possibility of a pandemic quite a few years ago. Of course it’s expensive developing drugs but they make more than enough money…. Everything is expensive, good education is expensive… It’s the duty of a civilised wealthy country/society to look after their citizens.
I beg to differ when you say “whatever the problems when relatively small numbers of people suffer nasty effects ….“, well it’s not a small number whose lives have been turned upside down, destroyed by Prolia, there are so many people paying a heavy price and I fear many more will do so still, unless they educate themselves through research, now the facts are known and refuse to have anything to do with that drug. It’s only too obvious we can’t trust doctors to inform us honestly,
In fact, would you please tell me why it is that medics, now knowing what the side effects are, still use that disgustingly dangerous drug? Why? It should be banned.
In fact I would like a lawsuit against this drug’s manufacturers to take place. I would probably not see the final outcome but it would appease me to know that the drug that ruined so many people’s lives would be banned and the manufacturers heavily fined. Justice and respect for all of us who are paying an incredible price for such a disaster as Prolia. This is bad science indeed.
I don't know what my situation is re osteoporosis - hopefully not too bad since I am 64 and very active. I took denusomab because three consultants had recommended taking bone protection, particularly when early days of being on large steroids for GCA and my GP said I would hopefully only have to take it once. As I said, I thought I had done my research and the side effects were probably worth the risk - but not now! I feel terribly guilty about agreeing for my mum to go on it. I wish I'd held out for aklasta.
Thank you for the help! This is yet another example of how the knowledgeable people on this forum have provided very timely information on picking the way through the minefield. XXX
One of the recommendations is to switch the patient to zolendronate instead of the denosumab (Aclasta instead of Prolia) which then maintains the achieved bone density.
Well, let’s hope your osteoporosis situation isn’t so bad yet. A DEXA scan will help in establishing the situation. By all means do all you can in helping to strengthen your bones the natural way. What I find upsetting is the fact doctors push people to have Prolia still now knowing how damaging it gets! It’s a crime! What do they take people for? I am rather angry because I pay a heavy price for their trials, a trial I was never made aware of… that’s shocking! Had I known they were still doing trials I would have refused straight away.
Don’t feel guilty about your mum… you didn’t know then… and at her age and her frailty it’s probably not so damaging…
Keep us posted. Take care.
I'm so sorry to hear your experience. It is really upsetting. We try to keep alert all the time, but it is impossible to know things we don't have access to. Love to you.
Could you or PmrPRO provide any links to the research about Prolia and rebuond fractures. My GP surgery uses it as the alternative for people who can't take oral meds and I feel I need to at least try and let them know...
I will during the weekend, tired now. Also Heron NS could provide good information, as well as PmrPro and many others. This is a wonderful forum.Sending love back… don’t hesitate to pm me anytime. x
For the science/medic educated reader this is pretty good:
ncbi.nlm.nih.gov/pmc/articl...
academic.oup.com/jcem/artic...
The second is a very international group.
The basic question to ask now for patients who have already started it is how long they intend leaving you on denosumab - it seems safe to carry on using it beyond the 3 years that was initially suggested.
I'm surprised that they don't use i.v. bisphosphonates - it does seem strange to jump to denosumab and it wasn't the case before as the price was high. I can only assume it can be adminstered by a practice nurse whereas the zolendronate infusions are usually given in the hospital setting.
Oh dear, I understand this more clearly now. This is very shocking stuff. The only side effect mentioned were the jaw stuff; nothing about the rebound although the GP knew I was only going to be on it short term. It seems it is okish for my poor old mum (though I would not have gone down this route had the info been available then) but entirely wrong for me. Thank you as ever PMRpro and JGBH and HeronNS for the heads up. I am forewarned so will make sure there is never any delay in my mum's treatment and will see what I need to do to tide me over when I stop in October.
The Royal Osteoporosis Society do mention this now on their Denusomab info, but I don't think it's strong enough so I will write to them and ask them to review. I will also check out what NICE say about it.
Also, loving thoughts to Artisam who started this post; hope you get a good solution soon. X
I have no problem with my husband being on it - his spinal osteoporosis is so bad and he is so frail it does need something major and there is no way he can swallow oral bisphosphonate. They also don't increase bone density so if the osteoporosis is sever they probably don't achieve enough.
Thank you. I'm going to ring ROS on Monday. I've read up all the treatment on their website - everything seems to have a downside. I just want to be sure I have the medication for me, not just the cheapest option! I'm also researching weighted vests.... Not feeling much better but it's so good to know there are many others who understand who I can offload too. ❤️
Please read my story which TheMoaningViolet has given you the link to. You may get some other ideas there which will help.
I've been reading and watching videos about the possible demise of the DEXA scan for diagnosing fracture risk. It's all about bone strength not density. I found this video particularly informative on the topic. It also gave some interesting suggestion on bone strengthening. I found it a bit tedious to watch, mainly due to the interruptions by the host, but considered it worth watching for a number of reasons.
I also now have osteopenia and can recommend a call to the Royal Osteoporosis society nurses, via their website. You speak to experts, I spoke with a lovely, knowledgeable, understanding nurse who talked me through my worries, questions, fears etc. I really appreciated her time and understanding.
DEXA scan results and thanks to this forum. 
Trying to get a DEXA Scan
Alendronic acid & DEXA scan
dexa scan whilst on pred?
Dexa scan
