Hi folks, My osteoporosis consultant has recommended an intravenous infusion of Zolendronic acid, as I can't stomach the Alendronic acid tablets. My last DEXA scan was January 2019 - the numbers I can't remember but they were at a low level yet not low enough for treatment. Consultant says they are bound to be treatment level by now hence the recommendation. I pointed out fractures are more likely after supplementation with Alendronic / Zoledronic acid as old bone is not being replaced by newer more flexible type over time. He argued that would be 10 years down the line and a 3 year treatment plan would not have the same effect.
So I agreed to have it, but since reading up on side effects think I'd rather not. Currently researching Calcium from marine source - (seaweed) because the standard calcium carbonate supplement is mostly peed out when blocked by pred and proton pump inhibitors. Also looked at Calcium hydroxyapatite but this can cause more reflux with those who already suffer from it.
I eat sardines, cottage cheese and yoghurt almost daily with at least 6 portions of fruit and veg. but don't get out a lot as I suffer from an irregular heart rhythm when taking exercise which makes me nervous and I live alone. Has anyone any advice please? Thanks in advance.
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strawclutching
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Just remember that the adverse effects listed are all the things that have been found - n-one gets them all and most people get none.
Personally, I would want another dexascan - in 11 years on pred my bone density has barely changed asn is still at a level that doesn't require intervention of more than calcium and vit D supplements which are needed even if you are on a bisphosphonate. Loss of bone density is NOT inevitable.
I don't think fractures are MORE likely - not if the treatment is limited to 3 years. But keep a diary and work out how much calcium you are getting in your diet and be sure you are taking an adequate vit D supplement as that isn't going to be gained from diet and it is unlikely you get enough from sun given age and other factors.
Thanks PMRpro. I'm taking 4,000 IU's of D3 and K2 every day though my rheumy thinks it's way too much and advises every other day instead. If I wait until January I'll be due another DEXA scan - they will only repeat them every 3 years, so maybe I'll wait for that and try to take more exercise. Gradually trying to reduce my dose of Omeprazole - down from 80mgs daily to 60mgs and will try next weekend to lower it by another 20 mgs. - do you think that will help calcium absorption or will it only help when I come off them completely?
I'm taking reclast IV once a year for my osteoporosis. This after two years my osteoporosis has gone back to osteopenia. I drink lots the day before but have not had any side effects from it. I've only been on the pred since Jan. So will see how that goes
I take 4000 IU all year round - and that just keeps my vit D level at the bottom end of the optimal range. Less and the level just falls slowly but steadily - and the local osteoporosis guru said everyone should be taking at least 2000 IU - we live far enough south for it to be just about possible to create vit D in skin all year round but there is a very high rate of vit D deficiency (and skin cancer)in the region. We have so many reasons to take more: older (at 65 you make a quarter of the vit D in skin you did at 20), wear more clothes (!), and in the last 18 months, don't go out as much anyway but the weather is rubbish in the UK and, above all, pred lowers the vit D level.
I suppose there's no way of knowing how much you actually absorb while on Pred and maybe it's different for everyone. I'll stick with the 4,000 IU's for now until my bloods tell me I'm overloaded.
Dear Strawclutching, what did you decide to do in the end? Just seen your thread from a few months ago. I was worried, too, having been told I had to have Zolendronic acid, (I have GCA), and reading the horrible list of possible side effects - but I went ahead and had it last week, and so far don't seem to have any of the symptoms, not even the fluey ones. However - in the last day or so I've noticed more pain in joints, and a definite arthritic flare up in finger joints. No idea if they're connected. Good luck to you, and hope you're doing ok.
So you think it's been a bit of a delayed response to the Zoledronic Acid? Hopefully it's just temporary? The downside of all these meds is we have to learn as we go so we're a bit like guinea pigs, and we're all different. I'm a magnet for side effects.
I seem to have been put on a long waiting list for the Zoledronic acid, so haven't needed to make a decision as yet. However when I'm finally contacted (if I'm still here!) I'm asking for a Dexa scan before I agree to any infusion. My next Dexa is due around Christmas time, 3 years after my last - they won't do one before that.
So in the mean time I'm doing all I can to increase my bone density with diet and supplements. The supplements I'm trying are Silica (from Bamboo extract), Marine calcium - supposedly more easily absorbed than over the counter calcium carbonate, which is typically blocked by Prednisolone and the usual PPI's. Also taking Soya Isoflavones and Red clover, which both mimic oestrogen - the hormone we lose post menopause, and of course I'm taking D3 and K2 to direct the calcium into the bones and not into the arteries to form plaque, or into the urinary tract where it can cause kidney stones and UTI's.
Seems like I'm popping pills all day, but maybe there will be an improvement. And I use British Supplements UK or similar organic companies which have no nasty bulking and preserving chemicals. Do let me know how you go forward with the treatment and good luck to you too
I’ve had Zolendronic Acid Infusions & they were totally unremarkable, so much so l thought they hadn’t actually added the ZA into the first drip infusion! But the effects or lack of effects were the same throughout & l wasn’t looking forward to it at all.
I didn’t have for Osteoporosis but as an adjuvant therapy following Chemotherapy.
I had Six in total over three years, every six months.
But in your position l would want another Dexa Scan before l started on a heavy duty drug if it wasn’t necessary.
Thanks Mrs Nails. It's good to hear from someone who's been there, and I think I need to see the numbers as they stand at the moment, as you recommend.
I, reluctantly, agreed to an infusion in March. I have not noticed any major side effects. However I have noticed my hair thinning & I am being more careful to wear sunscreen as I noticed my skin seemed to burn more easily. I am having a blood test shortly to check any changes. The rheumatology nurse rang as a follow up to my appointment with the Rheumy in February. She seemed more concerned about my PMR/Psoriatic Arthritis management than the infusion, which surprised me! She had never heard about hair thinning & is reporting back in that.
When I read about the thinning hair side effect, I was alarmed as I've already lost a lot of hair while being on the Pred for the last 8 months. You do expect people in the medical business to know all this stuff, but I'm rapidly finding out many of them don't. What changes might your blood test show? Another side effect is damage to already compromised kidneys which is another concern of mine. Thanks Pollyanna.
Hi sorry for the delay in replying. It’s not major thinning but I e always had thick hair & there is a definite thinning going on. As to the blood test I hope it will show little change since my last one in March but I’d like to know if the kidneys are ok. Vitamin D & calcium levels etc. Will also look at my cholesterol as I have been on a 12 week Fast 800 diet & pleased to say keeping the weight off since April. Fingers crossed all ok. Though I know my kidneys are slightly suspect hopefully no worse!
I understand your kidney worries. I'm waiting for blood results too regarding kidney function. They've been battered by 2 months of antibiotics and 40 years of diabetes. Your weight loss is bound to have helped the cholesterol. Good luck!
mentions the bone panel being done alongside calcium and other tests - so maybe no unless the GP asked for it. As I understand it though. the bone panel in isolation isn't that informative except alongside at least a basal dexascan.
As others have said, I would definitely wait to have a dexa scan first to see your numbers. I didn't get on with AA at all. I did have to agree to a Zalendronic infusion on diagnosis and pred as my bones are in a very poor state, and like you, thought I would have bad side effects, when actually I had a couple of days of feeling a bit fluey and then fine.I have been told I need another a year later which I'm not that happy about though. But not arguing just yet as it's not until Sept so have time to think about it.
Did feeling a bit fluey affect your stable Pred dose or did it pass pretty quickly? For me, feeling fluey would raise my blood sugars, so would require more insulin until it passed - another thing to juggle with which I'm not happy about. It's good you have a bit of time to think before your next infusion is due. Thanks Sophiestree.
I would say it was hardly noticeable, I was just heightened due to how badly I got on with AA, but actually, was fine. I too have a fair bit of hair loss, but I don't personally think it was due to that, I think it is pred and stress. Still not massively impressed I had it to be honest, but accepted I didn't really have a choice after seeing my T Score which was -3.9 so I didn't have a case to argue.However, I do believe it must last more than 12 months and so might plead for a 12 month grace period. I desperately need implants and no one will touch me now, and not for several years after. Frustrating when you are fed up with everything else on top, but can't change it now.
I'm guessing you mean teeth and not boobs! I have a friend who spent thousands on teeth implants and they all failed. He's been on Pred on and off for years but never had a bone scan. Probably because being a bloke he wasn't considered a risk for bone loss. He's still convinced it was all the fault of the dentist, not the state of his bones.I can see how you couldn't argue against the infusion with numbers like you had.
hahaha, yes teeth, but, like your friend, I would need a bone graft first, which is the exact reason why I have lost so many already. Teeth, urghhh, sick of them.
All I can tell you is , I had one lady September and honestly it made me do ill, I thought I was dying , within 24 hours I was shaking uncontrollably, pounding headache, pain in joints , then developed mouth ulcers which stayed with me all month , I know we don’t all react the same but , I have point blank refused to have another , so have been offered Prolia injections 6 monthly , think carefully and read as much as you can before making your decision, best of luck xxx
Rosebud, Prolia is dreadful. It should not be used because it causes severe rebound fractures once stopped, and you have to start on another so called osteoporosis treatment straight away. I was never told about the high risk of rebound fractures… and I wasn’t aware at the time when I was giving Prolia (Denosumab) injections back in 2013. I had to stop the treatment after 4 years before intensive dental treatment (actually now I believe the serious problems with my teeth and gums were due to Prolia) and then 2 knee replacement operations. I subsequently lost one inch in height, had horrendous pain and I requested an MRI scan in 2020 … (X-ray don’t always show small fractures) which showed I have insufficient of my sacral alar (broken pelvis) plus severe compression of L1 vertebra (first lumbar vertebra). I have now lost my mobility… and the pain has been incredible! All medics know these dreadful side effects now YET they carry on pushing this disaster drug onto patients! An excellent research was carried out by Professor Olivier Lamy and his team, from Lausanne university hospital. If you google it you’ll be able to read it. I understand if you have only one injection and stop then, you should not be at risk of rebound fractures from discontinuation of Prolia.
Furthermore the bone are not strong at all, they are porous so pretty useless, hence the rebound fractures! Unfortunately this seems to be the same for all the osteoporosis treatments. Quite a concern when one has serious problems with osteoporosis.
Apologies to Strawclutching for highjacking her post…
No apology necessary JGBH. It's both interesting and worrying to hear your story! Seems at times as though we're a bunch of lambs being lead to the slaughter. My mistrust of all things medical keeps on growing.
Thank you JGBH for this I will definitely google the research you have highlighted, I’m due to start the prolia next week and am not sure I’m going to accept it , have had both my GP and community pharmacist on telling me I should do as suggested but it’s my body , so me decision, I’ll take on board all you’ve told me xxxx
Indeed most important for you to do your own research since, as you have rightly pointed out, it is your body your life, therefore your decision. Don't let the medics and pharmcists bully you into accepting having Prolia. It is sickening they have the utter arrogance of telling you you SHOULD do as suggested by the "gods".... The doctos who so strongly recommend Prolia perhaps do not suffer from osteoporosis and obviously are not paying the heavy price of the disabilitating side effects and loss of independence, once discontinued and perhaps unable to go onto another osteoporotic drug. Had I been informed about the problems I would have declined Prolia and I believe I would still be able to have a better quality of life, still being able of enjoying gardening (one of my passions, now impossible to do), going for walks, museums, doing Tai chi , etc. Standing up is difficult and painful.
It is most difficult as to what to do when the T-scores are at a dangerous level. Fractures are frightening and can, eventually be life threathening. It seems there is little choice... catch 22 situation.
With Prolia, the rebound fractures can carry on up to 2 years after stopping.
I have looked at many research papers and I can't remember exactly where I read that: "because of the mechanism by which Denosumab (Prolia) works the quality of the bone being built up is not very good as it is largely the old bone which is being retain (so NO new growth of strong bone). That apparently increases the bone density (BMD) on Dexa scans and why people have atypical femoral fractures further down the line, the quality of bone is very poor. It is possible people having fractures are the ones who have been on long term medication of sorts, which interfered with their bone structure and their balance, a dangerous combination."
Bone density and bone strength are not necessary the same thing, a mistake in believing so.
When I last saw my osteoporosis consultant, an endocrinologist, she had to agree with me there are no treatment really for osteoporosis.... She recommended I should start Teriparatide, a daily injection for 2 years. I am not sure what I will do but not keen at all.... I requested another DEXA scan and a bone turnover test , I asked for CTx, the gold standard as opposed to others. It will take a month to obtain the results and the blood had to be sent to a London hospital for this test.
The link to Professor Olivier Lamy's paper is: researchgate.net.publicatio...
Another useful link: academic.oup.com/jcem/artic...
Another informative link: saveourbones.com/scientists This is reported by Vivian Goldsmidt, explaining in simple terms. It explains scientists (in Australia I believe) are discovering why stopping Prolia increases the risk of fractures. Hope you can access the links and that they will help you understand a little better.... and you can make your decision, what is right for you. Let me know how you get on.
I do not have any medical training but do read research papers, have read about people's experiences on/off osteoporotic drugs, read the opinions of members of this forum - usually always appreciated - and do have osteoprosis and had the unfortunate experience of having had Prolia. Keep in touch.
Totally agree with all you have said and really sorry you succumbed to these fractures. Many papers show that the steep rebound of all the old stored up bone reverts density back to pre treatment levels or even worse and can cause the fractures if not transitioned onto another antiresorptive from the bisphosphonates range.It’s also been found if you go on teriparatide after Prolia this won’t stop the rebound phenomenon at the time as it seems it will occur after you stop teriparatide. Just simply a nightmare drug.
Thank you for your message. Indeed it is true, sadly, those drugs used as an osteoporotic treatment do not actually help “repair” the damage caused by osteoporosis and eventually one is doomed to use these for life, with all the nasty secondary effects produced by these drugs. But how does one cope with severe osteoporosis? It’s a most frustrating and difficult situation. There is nothing yet to help treating osteoporosis… as my osteoporosis consultant actually agreed with me. Let’s hope one day a “proper “ treatment that actually helps rebuild new strong bones will be discovered. Meanwhile we need to do the best we can. Take care.
Please at least postpone your Prolia until you have time to really read and research it, it’s side effects and really importantly the rebound phenomenon of Multiple vertebral fractures which can occur as soon as 2-4 weeks after next Prolia due date and risk can go on for more than two years. This was first written up be Dr Lamy in 2016 and there are now very many studies covering this issue. but sadly so many Drs are still not discussing an exit plan and ensuring there is a safe bisphosphonate (eg. Fosamax, actonel or reclast) antiresorptive to take to try and safely transition off Prolia.
If you can’t take one of these drugs then you are basically in the Prolia trap of no drug and have the fracture risk.
Currently Amgen, maker of Prolia does not have this rebound spinal fractures info on the prescribing information or patient information in the U.K. unlike USA where it is very prominent now.
I will never be the same since my two and rue the day I ever heard of it 😢
Knowledge is power and allows you to make a fully informed decision. Good luck.
Indeed. I understand some people in the US are trying to take Amgen to court. Do hope it succeeds and that the drug is removed from prescription for osteoporosis! Enough damage done. I really wonder why there is a lack of ethics regarding the drug. … Of course, knowledge is power which allows everyone to make a fully informed choice of accepting or refusing that drug. Like you, I will never be the same and wished I had been warned of the rebound fractures. My decision would have been very clear. My wish is for other people not to suffer the same fate, not scarring people but making them aware before it’s too late. Hope you’re coping as well as possible.
Sadly I understand that it’s unlikely there will be a case against Amgen as they have the Prolia monograph filled which what appears to me to be every possible side effect listed and the warning about rebound spinal fractures. It might be possible for Drs to have a case against them due to not providing the information to be discussed prior to prescribing as recommended by maker.
I don't know that this information was known initially. I don't know when doctors were informed about the rebound osteoporosis. What I read about denosumab a few years ago was concern about its effects on the immune system, no mention of rebound osteoporosis, not even from the sites which generally disapprove of the medications and warn of the side effects. A lot of people suffering today would not have had the opportunity to be forewarned. There is, of course, no excuse not to be told of the risks today, and the risk has now been publicly known for several years.
Indeed the risks of rebound fractures are well known today to doctors, following Professor Olivier Lamy’s published research papers. So I really do not understand why doctors still recommended this treatment. What would be the reason when there are other drugs although none of them do actually help in building new strong bones? I find this very hard to understand.
It certainly shouldn't be offered as first line treatment to anyone for whom the older treatments would be suitable. I know there are cases where it is a preferred option. Let's say, offering Prolia to your average elder presenting with borderline osteoporosis and no complicating risk factors might be like offering prednisone to treat the pain of osteoarthritis when other less potentially damaging treatment is more appropriate. On the other hand pred is a preferred treatment (usually short term) for many conditions, despite its potential dangers - PMR, even though needed long term, not least among them! Circumstances alter cases. Doctors need to be better educated in the proper use of many medications, or at least know when to look things up to make sure!
I agree with you. I was offered it when first osteopenia was diagnosed and I was scared by the image doctors painted to me should I get osteoporosis, as it would happen eventually. I didn’t know much about osteoporosis then and certainly couldn’t find any sensible information about Denosumab then. I was 63, 13 years ago. I was very active physically. My RA was very well controlled too. I actually told my GP and consultant about the dangers of rebound fractures associated with Denosumab but they defend the product, stating femoral fracture would be very bad …. of course it would be bad BUT that attitude is not what a patient needs. So they have been informed now for a few years but still recommend it. It’s difficult not to ask oneself why patients are treated in that way. Who can we trust, because we do need to trust someone when experiencing such problems.
I know. There is all this hoopla about "experimental vaccines" for example, and yet I feel that osteoporosis patients, who for the most part are elderly women, are being experimented on all the time with these medications. As you point out, we are actually scared into taking them. This is not how it should be at all. I've always thought it interesting that my doctor who initially was sort of okay with my rejecting AA, suddenly became much more gung-ho that I take OP med after she's attended an osteoporosis workshop. Of course by then I'd done my reading and not long afterwards found out I didn't even have osteoporosis (misunderstanding and a doctor who was poorly informed by the radiology department) led her to believe I had osteoporosis. In fact at -2 I wasn't even close, and the "fragility" fracture (a factor in calculating FRAX score) was nothing of the sort.
In a way it helps me a little to see other people, living in a different country, have come to think the way I do, many other people feel that way too. We aren’t stupid, we deserve honesty and respect! So please for you you escaped from Denosumab! I just wish I could have too. Too late for me and many others. Good question indeed: WHO sponsored that workshop? I’d love to know…
It was first reported in 2016 by Dr Lamy (HGBH mentions him above) in Switzerland and slowly accepted as a major issue and added to Amgen’s monograph around 2018/9 I understand. I had my first in January 2019 and second in July 2020 and both package insets were last updated in 2016! Really shocking it’s taken so long for this to become common knowledge and tragic for those who have suffered.Regarding immune system, infection is one if the very common side effects and personally I had over 12 antibiotics in the year of Prolia, none in the year before or year after. I’m still on steroids. No doubt in my mind that my immune system was compromised.
I knew the date had to be around then because I did my major reading on osteoporosis in the latter part of 2015 when AA was being recommended to me. and it was a year or so later that I read about the rebound issue and then it was presented as new information, at least new to the general public.
It’s incredible really! Thanks to Professor Lamy, all doctors, since 2015, were informed about the rebound fractures but they still recommend this treatment now. Why, what is behind this? Surely vulnerable patients deserve better.
" the bone are not strong at all, they are porous so pretty useless, hence the rebound fractures"That is not correct and not the reason for the rebound fractures. The use of Prolia is now known to be associated with the problem and so the recommended protocol is either not to discontinue the Prolia or to switch to bisphosphonates once the Prolia has achieved an increase in bone density which it does very effectively.
We will have to agree to disagree…. Bones are porous and not strong. This is one reason for rebound fractures. Furthermore, NOT everyone can go on bisphosphonates after discontinuation of Prolia. I can’t, like many others. So it should not be prescribed as an osteoporosis treatment. I feel very strongly about this as do ALL the people who like me are paying the heavy price of losing one’s mobility and independence. There is a big difference between bone density and strength. Not the same at all. It’s high time medics realised that. People should be aware so as to make the right decision for themselves.
I read something about that very difference between density and fracture resistance just recently. If these drugs prevent natural bone breakdown, when those bones are scanned they read as being more dense, but because they are not being renewed by fresh 'flexible' bone, they are more prone to fracture.
Following chemo and continuing medication I have had three infusions. The first two caused no side effects. After the third I felt a little discomfort in my bones. The advantages far outweigh any short lived discomfort. Good luck
Agree - get another scan. I have had osteopenia or 25 years. When I had back surgery 5 years later, my surgeon stopped by to emhasize the good quality of my bones. However, my GP insists I have osteoporosis although my latest bone scan said osteopenia. I have lost no height and am 81, but she insists I must have it. So do get scanned again and stick to your guns.Thanks for the info on prolia - it's what she wants me to take! Good luck.
"You MUST have osteoporosis" - what an appalling non-scientific mind! I have 2 friends who are well over 80 and their bone density is better than most 30 year olds. And that's after early menopause in one and years of pred in both cases.
With my multiple myeloma, I asked for radiation as I have a plasmacytoma and clear bone marrow and bones. Was told it was impossible by hematologist. Finally, he agreed and it worked! He then said the problem was that all he does is push drugs! There was no communication or exchange of knowledge between the two departments.
My goodness you have a great deal to cope with. I wouldn’t be surprised about the goodies! A doctor friend told me once he was offered a holiday for two in a rather exotic place for using a certain drug at the surgery where he worked. They were all offered such bonuses. He was often offered weekends away in luxurious hotels too… My friend decided to leave the profession but I think this is unusual for someone to reject such corruption. Not reassuring for us, patients. Best wishes to you.
Kickbacks of more than $10 are illegal as far as I know but google says studies show it is happening in the USA in the form of indirect prompts - freebies and office visits by reps do have an influence on the next time that substance is to be prescribed. It is more difficult in the UK or any state-funded system because of the way drugs are paid for, Reimbursement here in Italy is for the cheapest generic - but I can choose to pay the difference and have a brand if I want to. So the influence of leaving free samples to give to patients influences the patient rather than the doctor here.
I have osteoporosis but am not taking any medication prescribed by my doctor. My 97 year old mother has been taken these medicines for years and as a result she has lost her jaw bones and in constant pain making her difficult to eat. I am not an expert but I personally believe in taking calcium vitamin, D3/K2 and collagen as well as exercises. Will see the result in my next scan.
It was necrosis of the jaw bone that frightened me in particular, and my heart goes out to your poor mum. I did mention this to the osteo consultant and he dismissed it saying those things only happen occasionally and after many years of treatment. He said they give 'breaks' from treatment so that would not apply, but I'm still not persuaded. I'm currently trying bovine collagen added to porridge daily with D3 and K2, also silica but I also read that Prednisolone breaks down collagen everywhere in our bodies, so I may be fighting a losing battle. Just live with fingers crossed I suppose. Thanks Thirtynine39 and lots of love to your mother.
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