What to take to discontinue Prolia safely and ... - Bone Health

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What to take to discontinue Prolia safely and for how long?

Arcadia10
Arcadia10

My GP has told me that there is no guaranteed way to discontinue Prolia safely, i.e. avoid rebound fractures of the vertebrae. After 4 injections over 2 years which caused one adverse medical event/reaction after another, I finally figured out why I was so ill and decided to stop having injections. I was not told before starting Prolia in March 2018 by either my then-GP or an endocrinologist that one had to be on them indefinitely or run the risk of rebound fractures. Alarmingly, there doesn't seem to be a guaranteed way out of this. The endocrinologist has given me 4 options: 1) take the risk of fracturing (about 15%, from what I've gleaned from the medical literature); 2) Aclasta (zoledronic acid) infusion; 3) bisphosphonates; 4) Evista (raloxifene). A few days after talking to her, I found a paper in the medical literature entitled "Raloxifene has no efficacy in reducing... the risk of spontaneous vertebral fractures...", so crossed that one off the list! Neither of the GPs I've seen thinks Aclasta is a good idea due to the bad allergic reaction I had to Prolia after the 4th injection as the Aclasta infusion would be in my system for a year and there would be nothing I could do to control side effects if they occurred. So another one crossed off the list! I agonised for weeks about just winging it and running the risk, and started taking strontium citrate which increased my bone density for 3 years in a row after I was diagnosed in 2012. However, reading the stories of the people unlucky enough to have had multiple spontaneous vertebral fractures after discontinuing Prolia scared me to death, and strontium citrate doesn't feature in the medical literature in terms of preventing rebound fractures. So I'm now left with bisphsphonates which I've always resisted taking due to ONJ, atypical femoral fractures and all the other nasty reported side effects. Ultimately I was prescribed Actonel (risedronate) 35mg weekly which I took for 2 weeks but had to give up before the 3rd tablet due to intense neck pain, severe dizziness and vertigo as well as slightly blurred vision. At my suggestion and as I was 7 months out from my last Prolia injection and the clock was ticking, my GP agreed to let me try the daily Actonel 5mg which I hoped would drip feed the drug into my system instead of hitting it with a big dose all at once. I took it every second day for 2 weeks and, apart from some slight grogginess and nausea, it was tolerable. I started taking it every day 3 days ago and so far, so good. However, neither the endocrinologist nor the two GPs I've spoken to seem to know whether taking a low dosage of Actonel daily will mitigate against rebound fractures, nor for how long it should be taken. From what I've read, Fosamax is the preferred treatment but the lowest dosage is only a weekly tablet which I think will be too strong for me - and I don't want to go back to that dark place of relentless side effects all over again. So I'd love to hear what others did to get off Prolia successfully. I don't ever take medication and got scared into taking Prolia after a traumatic shear fracture of my left tibial plateau in 2017 (so not a fragility fracture). I can't believe I'm now in this horrible position of trying to get off this drug and that so many medical professionals seem to be stabbing in the dark and don't have a guaranteed exit plan. Quite frankly, I'm terrified.

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I hear you regarding the fear of ONJ. I was having Pamidronate infusions (3 monthly) for about 7/8 years and they stopped them when the consultant changed. He decided I was to go on Zolendronic Acid so I had one infusion of that and I was told I would not have to go back for a year. In that time, I found out that ZA can cause fractures in the femur amongst other things and I found this out by looking online trying to find out why I had a pain in my right femur and why I suddenly started cramp at night in my legs and feet which I had not been having before, that was just a couple of things that had started to happen after ZA. I told my consultant that I wanted a drug holiday and have never gone back on any of them as I have always had a dreaded fear of ONJ etc. I can't answer your question I'm afraid but I understand everything that you are saying. It really all is such a nightmare. Even now my dentist is not sure whether she would be able to take a tooth out and that's after about eight/nine years. Would diet not help your predicament? Have you checked it out online? Sometimes I have come across one-off articles giving good advice that I have not read or heard anywhere before. Good luck and I sincerely hope you find what you are looking for. xx

Hi springcross - it sounds like you were fortunate enough not to have a femoral fracture despite the pain in your right femur. Did you have it x-rayed to see what was happening? I've heard that these femoral fractures can start off slowly with increased cracking over a period of time and then just snap. Presumably that's all been checked out in your case. When I experienced the severe neck and upper back pain after taking Actonel 35mg weekly, my GP sent me for x-rays immediately as I think she suspected that I might have had a vertebral fracture. Luckily all was fine structurally, but the pain only went away when I stopped taking the high-strength Actonel. Yes, I agree that it's all a nightmare. I spoke to my dentist before starting the Actonel and he wasn't at all enthusiastic. He told me that bisphosphonates stay in the bone for decades and that he wouldn't be keen to do any invasive work like crowns, extractions or root canal treatments while I was on them. I have no intention of staying on these long term, and he did say that up to a year was manageable in terms of dental work. Luckily I am extremely vigilant regarding my dental health and hygiene, have 6-monthly check ups, etc, and don't generally have any dental work done. However, I do have several large old fillings which the dentist is keeping an eye on because they might cause the surrounding tooth to fracture if I bite down too hard - and then they'll have to be crowned which could be problematical. I'm so annoyed and upset that I was put onto a drug (Prolia) to prevent fractures - and now I have to take another drug to prevent fractures caused by stopping the drug I was taking to prevent fractures! It's completely insane. I've read nasty things about zoledronic acid side effects online, how the infusion wrecked some people's lives for months. After having had 2 years of Prolia side effects, I'm not willing to risk anything that I can't stop immediately I get side effects so an infusion is definitely out for me. Apparently ZA is very strong, hence the possibility of atypical femoral fractures. I would be too scared to even try it. So the daily tablet of Actonel is my last hope. Re diet: I eat incredibly healthily, semi-vegetarian, take masses of supplements, eg. magnesium, vitamin K2, boron, zinc, vitamin C, curcumin, vitamin B complex, etc. Unfortunately it's only the heavy-duty meds which will get one off Prolia safely, I understand. The GP I'm now seeing (as my previous one refused to believe that Prolia caused any side effects and basically told me to go elsewhere when I became too much of a nuisance with constant complaints which she couldn't diagnose) is happy to let me stay on Actonel until the danger of rebound fractures has passed, and then start taking strontium citrate. SC worked really well for me in the past and doesn't appear to have any side effects, so I'm keen to dump the bisphosphonate with all its horrible risks and take SC again. There have been a few postings by people who have gone from osteoporosis to normal bone density in a few years using SC, and so I'm keen to give this a go. Good luck with your own health. I hadn't heard of pamidronate so looked it up. Do you have Paget's disease?

Hi Arcadia. I was just about to suggest you contact NOS when I see the Administrator post below regarding ROS. That is a really good idea.

Regarding Paget's, no I don't have that. I had a head first fall down the stairs and sustained two wedge compression fractures in between my shoulder blades (T4 & T5). It was high impact fractures not related to the osteoporosis but that's how they found the OP on Xray. I explained to the consultant that I had a very sensitive stomach so that's why she decided to put me on Pamidronate (which was not licenced here at the time - don't know if it is now). Regarding the bisphosphonates being in the bones for decades, yes that's what I read. No-one I have had contact with (consultant, nurses, doctors) have told me this, it is what I have found out by research on the internet. It makes me so angry as like you, had I known the dangers of the drugs, I probably would not have had them. I reported to my consultant the pain I had in my femur but he didn't order any X-rays although I did have a dexa scan followed up a couple of years later which showed my femoral neck was worse but my spine had improved. I chose to try to combat it with diet, exercise and sunlight (although I have taken Vit D supplements for a few years now) but last August was diagnosed with RA and put on Prednisalone and Omeprazole for seven months which has not helped one little bit. By the way, the pain in my femur disappeared a year after the infusion as I didn't have any more (at least I think that's why). My consultant did say I could try Denosumab, but I had already read up on that one so I declined PDQ!! Some GPs really - you'd think they could be a bit more sympathetic when dealing with people suffering with conditions like this it makes me wonder why they are doing the job if they can't do it properly. I was interested in curcumin but as I said, I have a sensitve stomach and couldn't take the black pepper I don't think. By the way, you could try adding Vit D to your list to take, my osteopath told me several years ago that it was as important as, if not more than, calcium. I'd be very interested to know more about the strontium citrate. I was offered strontium in the early days by my then consultant but it was new at that time and had the side effect (possible side effect) of diarrhea, I declined but I think that was strontium ranelate. Good luck Arcadia and I hope you get on well. I'd be interested to know how you get on in the future. xx

Oh, how nasty re the fall down the stairs and that seems to have been the catalyst for your being put onto bisphosphonates, first pamidronate, then ZA. The RA is most unfortunate too. Prednisolone and omeprazole should not be taken by people with osteoporosis as they wreak havoc with bone density, the latter by decreasing stomach acid and hence absorption of calcium and other minerals. Re calcium and vitamin D: I omitted them in error from my list of supplements, so do take them every day. I live in Perth, Western Australia, where there is an abundance of sunlight 9-10 months of the year and, as I'm outdoors exercising a lot, my vitamin D level is very high. So I don't need to take any more vitamin D but it's part of my Citracal tablet and I don't see any harm in having a bit extra. Here is a link to a strontium citrate success story on Inspire inspire.com/groups/national... - very inspirational (no pun intended) and, once I find a way to ensure I have prevented any potential rebound fractures in the wake of the Prolia "wonder drug", I will be going straight back onto it. Like you, I prefer the natural non-drug approach and found that the SC increased my own bone density by 3.9% in my spine in a year (although my hip density decreased) and the following year my hip density increased by 1.8%. I have come across similar positive results on various sites., so it's worth a try as far as I'm concerned. Prolia increased my bone density quite spectacularly by over 10% - but at a high price now that I'm risking vertebral fractures by discontinuing it. Great that you declined to take it. All the best for your good future health!

You know it makes me so angry that they dish out these bisphosphonates knowing what they can do to people, it's like we are being used as guinea pigs!! Yes, the fall was the catalyst for me being put on the Bs. I was so scared after being in hospital for three weeks having a job to move that I was agreeing to anything and my system didn't know what had hit it. I was not used to taking drugs but suddenly here I was on Co codamol, liquid morphine (by mouth), morphone substitute (Oramorph) and muscle relaxants, all several times a day, that was all the attention I got, I was pretty much left along to get on with it, it really was an awful time trying to shower every day and wash my hair with no help whatsoever, I even had a job to raise my arms. I didn't know about the Omeprazole until I came out of hospital and that's when I decided not to take it any more but then this came up about he RA and having to take it because of the steroid and I did it so begrudgingly and worried about it too but as soon as I had weaned off the steroids, I stopped the Omeprazole (too quickly though, silly me). I don't take calcium supplements as I understand they can cause problems and that it is much better to get calcium from diet than supplements. As regards sunlight, I used to be out in the garden most of the time in good weather and bad so I got a good supply of Vit D in addition to the supplements, but now that I am on Methotrexate for the RA, I have to stay out of the sunlight so that is another smack in the face. Thank you very much for the link to the strontium, I will have a good read of that. Take care of yourself and stay safe. xxxx

Yes, I too am annoyed about being used as a guinea pig and kept in the dark as to the long-term issues of getting off Prolia safely. The package insert mentioned ONJ and atypical femoral fractures but I was told these were extremely rare by the endocrinologist who prescribed me Prolia - and that none of her patients had any problems with it. Well, I'm sure they must be having some problems but possibly, like me, they are just putting all their ailments down to something else until they have to face the reality that it's a drug they're taking that's causing all the problems (and I wasn't taking anything other than Prolia). When I asked the endocrinologist at my appointment 2 months ago why she didn't tell me that one couldn't discontinue Prolia safely because of rebound fractures, she said "we didn't know". When I raised my eyebrows in disbelief (because I have since come across papers published in the medical literature in 2017 that document this problem - a year before I was put onto Prolia), she said "well, actually we did know - we just didn't accept it". Well, bad luck for me then (and others), not being told of the potentially damaging and life-changing consequences of not being able to remain on Prolia for life. I think it's criminal that doctors can treat their patients so disrespectfully, to mention nothing of the Hippocratic oath, do no harm, etc. Sorry for the rant. Good to get it off my chest. You stay well.

I couldn't agree more, if it had been her having to take the drug, you can bet your bottom dollar she would have refused. It's like the "you go first" attitude and we'll all learn from you. So selfish and uncaring. Take care, all the best. xxxx

They knew but just didn’t accept it! What can you say to that? It’s even worse to think that they are still prescribing it three years on when problems are being widely reported.

Yes, that is the scary part - they are fully aware that there are health-compromising issues once people want/need to stop Prolia, but just carry on merrily prescribing it (and probably not informing their patients of the implications of discontinuing it). I did ask the endocrinologist what happens once all the people now on Prolia get to the 10-year safe limit. She told me that it'll probably be extended to 20 years as further testing will have been done by that stage. Well, that's all hypothetical, to my mind. What if people HAVE to stop taking it because it hasn't proven to be safe after 10 years of use? There will be masses of people having rebound vertebral fractures - and their bones will be in far worse condition after 10 years of turnover/resorption being slowed than mine are after 2 years. I think it's criminal, but there's a lot of money involved, as usual...

Jhnard
Jhnard
in reply to Arcadia10

I’ve debated SC after being off Prolia now for 1 month over starting a bisphosphonates probably Fosamax. I have read that some places won’t do DXA scans because of the false results in scans due to the way SC shows in the bone. Have you run into this or heard about it?

Arcadia10
Arcadia10
in reply to Jhnard

I had three DEXA scans done while taking SC (2013-2015). The first time, I asked whether the machine should be recalibrated as I was taking SC. The radiographer didn't know anything about it and said recalibration was not an option. The following two times I didn't mention it. I don't think they would base your suitability for a DEXA on the medication you're taking. They don't need to know as it's your doctor who refers you for a scan ( I'm in Australia, so it might be different here). My understanding is that SC results in 10% higher DEXA readings than normal. That's not very much and, as long as your bone density is increasing, you're doing well!

I started taking SC when I was first diagnosed in 2012 as I didn't want to take bisphosphonates. My then-GP certainly didn't push me in the bisphosphonate direction as she had warned me about the possibility of developing osteonecrosis of the jaw, and I really didn't want to risk it. So I read Lara Pizzorno's book: "Your Bones" and decided to try SC and some other supplements to strengthen my bones naturally. In the 12 months from when I was first diagnosed to 2013, my spine increased by 3.9% from -2.2 to -1.9 although my total hip decreased by 4% from -3.1 to -3.3. In 2014 and 2015, my spine remained stable at -1.9 although the BMD lost a little bit. In 2014, my total hip increased by 1.8% to -3.2 and in 2015, my total hip increased to -2.8. In this time, I was taking SC plus magnesium, vitamin K2, boron, zinc, calcium citrate, vitamin C and B complex - no other drugs. In 2016, I had a change in personal circumstances and became a bit slack in taking SC and I think at the same time the brand I was using (Doctors Best, ordered from the US) was discontinued and it wasn't so easy to source SC in Australia, so I just forgot about it, meaning to get back to it. I eventually ordered some Life Extension SC, but never took them. A year later, my bone density had fallen to -2.3 in my spine although my total hip remained stable. Then in 2017 I fractured my left tibial plateau and got scared into having Prolia injections. I'm now on daily 5mg Actonel to wean myself off the Prolia safely, but intend to stop it as soon as I'm convinced that I've passed the post-Prolia rebound fracture danger period. I will then go back onto the SC and have frequent NTX/CTX tests done for another 6-12 months on the SC.

Just a thought as you mention you've been off Prolia for 1 month now - you do realise that there is a risk of vertebral fractures if you don't replace Prolia with a bisphosphonate immediately, don't you? Don't leave it too long. SC hasn't been tested as a means of preventing rebound fractures. I took SC for two weeks after my missed Prolia injection while I was debating what to do and as I hadn't been able to tolerate the weekly 35mg Actonel. However, after doing a lot of research into the best relay drug, I decided I wasn't prepared to run the risk of multiple vertebral fractures, not knowing whether the SC would work or not. After a bit of trial and error, I found I could tolerate the daily 5mg Actonel and committed myself to taking it for at least 18 months. You should probably find a similar bisphosphonate that suits you, and think about SC further down the track once your CTX is stable and the danger of rebound fractures has passed.

ROSAdmin2
ROSAdmin2Administrator

Hi Arcadia10, I'm sorry you're finding yourself in this dilemma. You are very welcome to ring the Royal Osteoporosis Society Helpline to talk this through with one of the osteoporosis specialist nurses. Our freephone number is 0808 800 0035 and we're open between 9am and 1pm Monday to Friday.

Arcadia10
Arcadia10
in reply to ROSAdmin2

Hi ROSAdmin2 - I'm in Perth, Western Australia, so unfortunately it's not really appropriate for me to call your ROS Helpline. I've tried our osteoporosis organisation here (Arthritis and Osteoporosis WA) but they can't give out any medical advice. Instead I was referred to a local GP who takes a special interest in osteoporosis, attends conferences on the subject, etc. She's one of the two GPs I've been seeing/talking to in recent months and was the one to advise me to take Actonel 35mg (which I've tried and can't). She doesn't know whether the daily 5mg tablet will be as effective as the weekly 35mg tablet. Both she and my new GP have no first-hand experience in getting their patients off Prolia as they tell me that their patients haven't had any side effects. Until I looked online at other people's stories, I was feeling like the unluckiest person on the planet as I had one side effect after the next on Prolia, and the medical professionals I saw over 18 months (and there were many of them) just didn't accept that Prolia caused side effects, so refused to take me seriously! I even called Amgen in Melbourne, but was ultimately told to consult a GP. So round I go in circles! Hopefully someone on this site will have some good personal experience to share as to how they got off Prolia safely.

ROSAdmin2
ROSAdmin2Administrator
in reply to Arcadia10

Hi Arcadia10, if you wish you can email the Helpline nurses with your queries instead, at nurses@theros.org.uk .

Best wishes.

Arcadia10
Arcadia10
in reply to ROSAdmin2

Thanks, I'll do that.

Arcadia10
Arcadia10
in reply to ROSAdmin2

I had a reply today from a very interested and helpful nurse at the ROS, so thanks for pointing me in their direction. She said that which drug is more effective in preventing rebound fractures when stopping Prolia is a matter of discussion and debate in the osteoporosis world, and that there is no clear answer to this yet. This bears out what I had been reading in the published medical literature. However, she did say that the ROS has had calls to the Helpline from people who have not fractured, so that is reassuring. It's not a given that this will happen, but a significant risk - nice to keep at the back of one's mind while navigating through this minefield!

msw67
msw67
in reply to Arcadia10

Alendronate (Fosomax) is the drug of choice for hopefully maintaining bone density and preventing rebound fractures after stopping Prolia according to my Stanford doctor. Alendronate can be taken as a 5 mg daily dose (or 35 mg weekly). I asked her about Actonel and she said not proven. I have been on Fosomax for a little over a year (my last Prolia shot was October 2018). I am due for a bone density scan. During this time my doctor has monitored CTx to check for rebounding bone turnover markers. Good luck. I wasn't willing to roll the dice on taking nothing. Have you read Lamy's article on stopping Prolia?

Arcadia10
Arcadia10
in reply to msw67

Thanks for the info re Actonel not being proven, msw67. That bears out my not being able to find any paper in the published medical literature supporting its efficacy in preventing rebound fractures except for a mention in the paper by Lamy (which I do have, thanks) entitled "Stopping Denosumab". In it he says that 5 women received once-weekly risendronate 35mg and reports on the effect on BMD after a year, but doesn't mention spontaneous vertebral fractures and whether they experienced any. A year is not a long time regarding follow-up as I understand these fractures can continue for up to 2 years, so who knows what happened further down the track after the study ended. Yes, it appears that a bisphosphonate is the gold standard for preventing rebound fractures, and specifically the once-yearly infusion of 5mg of zolendronic acid (Aclasta/Reclast) which neither of the GPs I've been speaking to think I should risk after the side-effects from the injectable Prolia. Good to hear that you're on Fosamax (which I read is the second choice after ZA) and apparently haven't had any problems, either in taking it or in terms of fracturing. It will be interesting to get your BMD results from your next scan - the definitive test of how effective Fosamax has been. How often are you having your CTx checked? I was told I should have a FMBS (Fasting Metabolic Bone Study) done 3 months after my missed Prolia injection, so 10 June. Do you know if it's a good idea to have them done more frequently? Re Fosamax 5mg daily - it isn't available in Australia, according to my GP, which is why we decided to continue with the unproven Actonel 5mg daily. You must be in the USA as you mention Stanford, so the 5mg Fosamax must be available there. How long had you been on Prolia for before discontinuing? Did you have any particular reason for discontinuing Prolia?

msw67
msw67
in reply to Arcadia10

I was on Prolia starting in Oct 2015 with my last shot in Oct 2018

I started having gum problems and lots of colds and had an acquaintance that developed ONJ so I decided to stop. When I started Prolia, it was not yet known that stopping could cause rebound fractures. I'm not sure anyone knows for sure how to discontinue Prolia, but I changed doctors and the new one is supportive of frequent CTx tests. See below:

5/22/19

51pg/ml

6/14/19. 70

8/5/19 167

9/6/19

202

10/11/19. 277

12/7/19

269

2/10/20

348

3/13/20. 190

She actually says the reclast shot works best if you can wait until the bone turnover markers start to rise, but that is tricky in preventing rebound fractures. So an oral bisphosphonate may turn out to be the treatment of choice. Hope this helps.

Arcadia10
Arcadia10
in reply to msw67

Thanks for this. So it looks like you're being tested for CTx markers every month or two and that the idea is that the figure should keep increasing. Looking at my Fasting Metabolic Bone Study results, I see that I'm being tested for NTx markers, not CTx. Looking them up online, they both seem to measure resorption, NTx using urine and serum and CTx using serum for testing. However, the NTx should decrease as the bone resorption is inhibited. The last 2 years I was on Prolia saw mine down to <20 n/mol BCE/mmol. The aim is to keep it at <50. So not sure why CTx should optimally increase and NTx should decrease. I might ask to get my tests done more frequently after the one coming up in June.

Yes, I read that reclast works best when bone resorption has already begun but difficult to time. I won't be able to have the infusion anyway (unless something dire happens with my bone resorption on the Actonel 5mg and I get desperate).

ONJ sounds nasty and I'm not surprised that you stopped taking Prolia because of this potential side effect. The more I read, the more people I come across who have developed ONJ, despite doctors saying how rare it is! It worried me too but I'd just broken my left leg and got scared into taking Prolia when I wasn't at my rational best. Of course, there is the same ONJ risk with a bisphosphonate. Are you going to stop using bisphosphonates once you feel you're beyond the rebound fracture danger period?

msw67
msw67
in reply to Arcadia10

CTx is the same kind of test as NTx. Low numbers show that the drugs are suppressing bone turnover. My numbers have been gradually increasing after stopping Prolia so Fosomax is working but not as well as Prolia. I expect that will also happen with you on Actonel. The hope is to not see a huge increase in CTx values which would indicate a Prolia rebound and possible fracture risk. Then the plan would be a reclast injection. Again, I've been using Lamy's article as a guide. And I do hope to stop Fosomax when the danger has passed. Frequent CTx testing has kept me sane as I worry about rebound.

Arcadia10
Arcadia10
in reply to msw67

I see, msw67 - thanks for the explanation. Should both CTx and NTx optimally be <50 (indicated on my FMBS report as the figure below which my result should lie), or does CTx use a different scale? I ask because a respondent to my question said that her crosslaps (which I looked up and see is CTx) is now 1699 after 11 months off Prolia without any follow-up drug. It sounded high to me but I'm not familiar with CTx results.

I see that your last CTx figure in March 2020 has come down from the previous one in Feb 2020 to almost half, so presumably that indicates that the Fosamax is working well in your case and hopefully that the upward trend is reversing. Where does your doctor think your CTx will end up, and at what point will you stop taking Fosamax? Would you have to return a stable CTx for a period of months before deciding it's safe to stop?

As a matter of interest, is there any reason why you didn't opt for the Reclast infusion first off instead of the oral Fosamax?

Sorry to bombard you with questions but you and your doctor appear very knowledgeable about all of this and I'm still groping around trying to navigate my way out of this mess. It's incredibly helpful to have your input.

msw67
msw67
in reply to Arcadia10

Here are some published ranges:

Female (premenopausal): 40-465 pg/mL

Female (postmenopausal): 104-1008 pg/mL

1699 sounds dangerous to me. Before I started Prolia is 2015 my CTx was 621 pg/ml. I don't have an end game yet, just testing and waiting. This where there are not enough studies of women going off Prolia (hard to do a trial where fractures are a possibility). And I decided on Fosomax after Prolia for 2 reasons...seemed like it maybe worked better in preserving bone density and I didn't like the idea of a yearly injection.

I feel your pain. I was frantic last year in April waiting to speak to specialists and figure out what to do. I think even the specialists don't know for sure.

Arcadia10
Arcadia10
in reply to msw67

So you were a bit higher than the middle of the CTx range before starting Prolia, so not too bad. I suppose that's not the only indicator that it's appropriate to start an OP drug. BMD would have to be low too and indicate OP for treatment to be recommended.

By comparison, the reference ranges for NTx are:

Females:

Premenopausal: 17-94 nmol BCE/mmol creatinine

Postmenopausal: 26-124 nmol BCE/mmol creatinine

so obviously a different scale to CTx.

My NTx was 45 in Feb 2018 before I started Prolia in March 2018, so <50 as targeted and just below the middle of the reference range. Despite that, I had what I understand was bad osteoporosis (spine -2.3, femoral neck -3.4, total hip -3.1), so there can't be a direct correlation.

Re women going off Prolia: I suspect in years to come there will be an increasing number of women discontinuing Prolia, not only because of the side effects which can become worse the longer one is on it, but also because they HAVE to stop. A few of the papers I've read have said that it shouldn't be taken for longer than 5 years, the equivalent recommendation for bisphosphonates, because of the increasing dangers of ONJ and atypical femoral fractures the longer one is on it. Most other papers have said 10 years is the limit for Prolia. Whichever, it appears that it can't be taken for the rest of one's life - and then what? There will be women in their droves trying to get off it safely, and probably at around the same time. We're about at the 10-year limit now for some early takers as it was put on the market in 2010 (perhaps later in Australia). Maybe then doctors will be forced to formalise a standard plan to get their patients off Prolia safely - and not put others on it in the first place. Most medical professionals I've spoken to hear don't want to hear a word against Prolia, and seem to regard me as a nuisance because I'm rocking the boat by stopping it.

Anyway, thanks so much for your input. You're a year ahead of me in this (I had my last injection in Sept 2019) so I'm learning a lot from how you're managing your situation. I hope we both get through this without any fractures or other adverse events. Being on a bisphosphonate does not sit comfortably with me at all but I realised that doing nothing could put me in a much worse place. The message I received from JandoraKyani (very high CTx) below is frightening.

msw67
msw67
in reply to Arcadia10

I was way too hasty in starting Prolia in 2015. I had fallen and fractured my distal radius (wrist) and my GP and bone doctor said I needed to be on drugs. I had taken Actonel years prior to 2015 but Prolia sounded like an easy way to build bone density. My Spine was only -1.9, but my hips were bad -2,5 (neck), -2.3 total. Interestingly, being on Prolia did nothing for hips but my spine improved to -1.1.

Here in the states it seems as though once you start Prolia you are on it for life. One doctor I spoke with said he is only prescribing it for his elderly patients.

Keep me posted.

Arcadia10
Arcadia10
in reply to msw67

I was too hasty in starting Prolia as well. Funny how breaking a limb propels one into taking drugs as the cure-all! I had the Prolia syringe in my fridge for about 6 weeks before finally going to the doctor to have it administered. I should have used the time to research what I was getting into... a lesson for the future!

I read in several of the papers to do with stopping Prolia, including the one by Lamy, that taking a bisphosphonate for a few years prior to taking Prolia protects somewhat from the rebound effect. So the fact that you've been on Actonel may be of benefit to you now. Fingers crossed...

I read somewhere that, because of the mechanism by which denosumab works, the quality of bone being built up is not very good as it is largely the old bone which is being retained. That is apparently what increases the bone density on DEXA scans, and presumably is why people have atypical femoral fractures and probably the rebound fractures further down the track - the quality of bone is very poor. It makes me wonder what is better - to have poor-quality dense bones or less-dense bones which are better quality because they haven't been interfered with chemically and have had new bone cells (?) laid down naturally. When I think of all the elderly people I've known in my 65 years (parents, aunts, parents of friends, etc), I don't know anyone who has ever broken anything. One 90-year old gentleman fell over backwards twice after losing his footing, went straight down onto the floor, and didn't suffer any damage except for a large bump on his head! He never drank milk in any shape or form, not even yogurt, and had a poor diet after his wife died. So that begs the question - how many elderly people have osteoporosis and yet live happy, healthy lives without suffering a fragility fracture? Possibly the ones having fractures are the ones who have been on long-term medication of sorts which has interfered with their bone structure and their balance - a dangerous combination. After all this is over, I intend to be one of those people, managing my bone density and maintaining my bone health without prescription medication.

andie55
andie55
in reply to Arcadia10

Good for you. I went off it cold Turkey because I didn't trust what they would do next to me. Very uncaring doctors and in my opinion, taught only how to use drugs and avoid worthwhile natural alternatives for what ails you.

Arcadia10
Arcadia10
in reply to msw67

Did you see in Lamy's paper on stopping denosumab that the protocol for taking alendronate is 70mg weekly, not 35mg (Table 3)? I just noticed that today on re-reading. You said that you are taking 35mg/week - and I'm taking risedronate 5mg daily, so = 35mg/week. Maybe that need to be doubled?

My first metabolic bone study on this regimen will be 8 June when I'll see what the bone turnover markers are doing. Crossing fingers...

msw67
msw67
in reply to Arcadia10

Hi. So I just checked my prescription and I am taking the 70 mg alendronate. Sorry for the confusion. The bone markers are key.

Arcadia10
Arcadia10
in reply to msw67

My mistake, msw67. I assumed that you were taking alendronate 35mg per week as you mentioned it in your first message. Yes, the bone marker test I'm having in June will reveal all. Possibly I willl have to double the dosage to align with Lamy's protocol if 35mg risedronate is not suppressing the turnover. I am concerned about ONJ with the higher dosages, though. Apparently zoledronic acid being so potent is the worst for developing ONJ. I came across a paper last night in the Australian Dental Journal, "Denosumab and osteonecrosis of the jaws", 16 Aug 2014, which says that "the overall incidence of ONJ in cancer patients receiving denosumab was 1.7%" but otherwise that denosumab -related ONJ is comparable to bisphosphonate-related ONJ in presumably healthy patients in the region of 1-2%. I think that those percentages are very high for a side effect which is being touted by the medical profession as rare! You mentioned that an acquaintance had developed ONJ and I've read a of several similar occurrences on this and other sites. That would be absolutely horrific. What a mess this all is. I hope we get to the other end of it unscathed.

HeronNS
HeronNS
in reply to Arcadia10

Actonel is a bisphosphonate. Its a name for risedronate.

Jhnard
Jhnard
in reply to msw67

Interested to know you did on your DXA scan. Your story is similar to mine - gone off Prolia and don’t want to roll the dice. So thinking of going on Fosamax.

msw67
msw67
in reply to Jhnard

I have a DXA scheduled for next week, though on a different machine due to Covid. I also have been off Fosomax for 3 weeks due to heartburn issues and my CTX numbers are back in the 300 range. Never a dull moment.

I can’t offer any help but I’m just so shocked and saddened by your story. It is truly appalling. No wonder you feel terrified, I hope you can find the information you are needing. Your predicament is dreadful.

Thanks for your sympathy. Thank heavens nothing dreadful has happened yet, but I feel as if I'm going to spend the next year or two waiting to hear the dreaded crack as a vertebrae fractures if I don't take anything to mitigate the risk. There are some horrible stories on this site of people who, through no fault of their own, didn't follow Prolia with any other drug and had up to 8 spontaneous vertebral fractures (someone called Elizabeth, in particular). My heart goes out to them. Amgen didn't run the clinical trials for long enough to know that this would happen if people discontinued Prolia. I can see a class action happening one day...

Could call the ROS over the internet? The nurses are so helpful and I think it would really help you to talk with them.

I sent an email to the nurses at ROS earlier today on the advice of ROSAdmin2. Thanks for also suggesting I do so. I just seem to get a lot of contradictory opinions and "we don’t knows" from the medical professionals in Perth Aus I've consulted so far. Here's hoping...

I am so sorry you are having to go through this....what I don't get is: Why are doctors still prescribing these horrid drugs to begin with? They have now put you in basically a no-win situation..I hope what you're doing now will help you. These awful bone meds should all be taken off the market...

Yes, sweetsusie, that's the question I asked the endocrinologist: why is this drug (Prolia) still on the market? She said that it's perfectly safe and increases bone density more significantly than other OP drugs. She, like the GPs I've spoken to, seem completely oblivious to the multitude of people online who have had their lives ruined by Prolia and the other OP drugs. They also keep telling me that NONE of their patients have had any problems with Prolia, making me feel as if I'm some sort of medical anomaly! I'm sure that none of these medical professionals sit down in their spare time and read the online stories of people from around the world who have had horrible, damaging and even merely intolerable side effects from taking these drugs. No, the drug reps tell them that such-and-such is a new wonder drug and they pull out the prescription pad. In the treatment of OP, I think it's just expedient for them to keep prescribing Prolia over other drugs because, as it's a twice-yearly injection, it's easier to manage compliance than trying to monitor someone who has to take a daily, weekly or monthly tablet, especially an elderly and possibly forgetful person. Why OP drugs in the first place? Well, I'm new to them and only see the negatives at present due to my bad experience with side effects from Prolia, but I suppose they do build bone density - although of questionable quality and at a terrible personal cost in many cases. The cynic in me says that the drug companies make billions of $$$ out of the OP drugs, so I suppose that relentless marketing to GPs plays a huge part as well.

Yes...you're right about this, Arcadia10...also, I think a lot of the doctors get a kickback for each and every prescription they write for these horrid drugs. I have osteo, too, but I'll never take another bone med. I was take Fosamax...just 2 pills in and I was in a restaurant eating with a friend and ended up spewing food all over the place because I started choking and could swallow! No way...anyway...take good care...there's a lot of advice on here from people who have done all sorts of nature remedies that seem to work....

That sounds horrible, sweetsusie, re the choking. Were you on the weekly Fosamax? I found with the two weekly Actonel tablets that I took that I felt my throat was closing up and it felt tight when I swallowed. That was only one of the side effects and I stopped taking it after 2 weeks, so don't know whether it would have got worse to the extent that yours did.

I agree re not taking another bone med. Once I've got off Prolia safely and successfully, I'll go down the natural route, take supplements, etc, and probably strontium citrate. These OP drugs do more harm than good!

I think at that time, it was once a day? But, I can't really remember....it was very scary...not to mention embarrassing! Never again!

andie55
andie55
in reply to sweetsusie

Cancer is big business. it's all about getting us roped. That is how they got me on Prolia when my bones were not even really bad. Let's stop the madness. When will everyone wake up and realize what are doctors are doing to us? Big PHarma is sucking the life out of its Guinea pigs.

Arcadia10
Arcadia10
in reply to andie55

Hi andie55 - I have to agree with you. Some meds are necessary but I'm sure that a lot do more harm than good. Doctors just don't know all they should about what they're prescribing, and the clinical trials are also often too short to be reliable indicators of results in the long term. Remember thalidomide? Another "wonder" drug (not).

Hi Arcadia10, an Adelaidean here finding myself in a similar boat. My GP prescribed me Prolia in August 2015. I'm almost too embarrassed to admit that I just stupidly trusted her and didn't even look into what it was she wanted to give me. I've looked back over my PBS history and about 2 months after the first jab, she prescribed a cream that was "a combination antibiotic and steroid used on the skin to treat an infection and relieve associated itching and swelling" yep, that's around the time I started getting these weird rashes all over different parts of my body. Little did I know that Adverse Dermatological Events were one of the side effects of this poison, and my damn GP didn't pick up on it either, nor did the Dermatologist she sent me to! I only discovered all of this, when after discounting just about every other possibility, I decide to look up and see if this Prolia was throwing anything into the mix re my skin and OMG! So my last (8th) jab was on the 21st of June 2019 and so far, no multiple fractured vertebrae, although I've only recently seen an endocrinologist who wants me on the 35mg once a week Actonel like yesterday. She did crosslaps (?) bloods and the reading came back very elevated at 1699 (I looked it up and apparently the high end for a post menopausal woman is 1008) so my bones are quite literally turning to powder. I have no idea if any of the natural things that I'm trying like turmeric, prunes, hydrolysed collagen etc are or will have any effect, or if the rebound of the Prolia will just over-ride everything and it didn't help that the GP that I asked to refer me to the Endo, neglected to attach the bloods that I'd had taken by his predecessor, and a good deal of my appointment was spent with me on the phone to the dentists to organise an emergency appointment and the Endo trying to get copies of my bloods! So, the dentist saw me and I'm looking at losing 10 teeth, the 2 back teeth top and bottom on both sides and the bottom 2 front ones. Needless to say, I'm majorly disillusioned by the Medical Fraternity and looking for a good Medical Negligence lawyer. I've also lodged a complaint against my ex GP with AHPRA, the HCSCC and reported an adverse event to the TGA and really don't want to swap one poison for another but it looks like I have no choice!

Hi JK - boy, oh boy! You've had a tough time. What a terrible and frightening story. You must be so angry about what's happened/is happening to you. The lack of caring and lack of knowledge on the part of the medical professionals who prescribe Prolia is criminal, in my opinion (and hopefully also in the opinion of the medical negligence lawyer you find). And, yes - we do have a tendency to trust our doctors, don't we, and expect that they have our best interests at heart. Without sounding too cynical, I've realised over the years that medicine is a business (a GP actually told me that!) and doctors are watching the bottom (financial) line, so don't have time to spend on in-depth research into every drug they prescribe or think laterally when adverse reactions which could be side effects present themselves as they are too busy getting people in and out the door. No, patients these days have to advocate for themselves and monitor their own health, and it's good that you were able to put 2 and 2 together regarding your rashes and work out what the culprit was. Were skin problems your only side effects, or did you have others? Whatever, the problems were enough to make you stop having Prolia injections - which is the beginning of problems on a different level, unfortunately.

So you're 11 months out from your last injection and haven't transitioned to a bisphosphonate. From the perspective of a patient finding herself in a similar position and who has been reading extensively for the past couple of months, I would agree with your endocrinologist that you should get onto a bisphosphonate immediately. People have started having multiple spontaneous vertebral fractures as early as 3 months after the date of their last missed injection, so 9 months after their last injection. You're in the danger zone now. I also understand that the longer one has been on Prolia, the higher the chance of having the MSVFs, so 4 years bumps up the probability. Here's a link to a very good paper co-authored by Lamy entitled "Stopping Denosumab" published in Jan 2019 which runs through the options: researchgate.net/publicatio...

Your endo has prescribed Actonel weekly 35mg which, although an oral bisphosphonate, appears to be unproven. I was prescribed the same dosage and I think it's because the weekly tablet is enteric coated, so doesn't risk causing gastric ulcers which appears to be a problem for a lot of people on the oral bisphosphonates. It will have "Actonel EC" on the packet. I found that it caused side effects, so am on the non-EC 5mg daily Actonel tablet, and make sure I drink at least 3 glasses of water when taking it and remain standing up for over 30 minutes as instructed to ensure it goes straight down and doesn't get stuck anywhere. I haven't had any problems with the 5mg tablet, so something you could try if the 35mg tablet doesn't work for you.

Re the fracture risk, it's good to be as informed as possible. Here's a link to what I think was the definitive paper on the incidence of rebound fractures after discontinuing Prolia, also by Lamy and published in Feb 2017: researchgate.net/publicatio... It really scared the living daylights out of me! I started reading online real life stories of people who had experienced MSVFs and it's not pretty. The implications and life-changing effects of fracturing vertebrae made me decide to abandon all thoughts of crossing my fingers and hoping for the best (aided by various supplements, including strontium citrate) and start taking the 5mg Actonel. People have ended up disabled, in wheelchairs, having a series of operations, and the pain is excruciating, apparently. My GP told me that the vertebrae tend to crush down in a wedge shape and cannot be repaired! So doing nothing at this stage can have terrible consequences - and you're stuck with them for the rest of your life. After weeks of agonising, I just couldn't run the risk as I live on my own in a double-storey house and had visions of having to sell my home, go into care, etc. The odds of having a fracture post-Prolia without following up with another drug are between 5 and 15%, from what I've read, so not terribly high - but what if you're not one of the lucky 85%? I'm 65 and very active, love travelling, and have lots more I want to do in the next 15 years, and the thought of spending them in a wheelchair in pain is horrible, so a no-brainer once I'd thought everything through and weighed up the odds. Having said that, I have an acquaintance with whom I've spoken at length who DIDN'T have any fractures 18 months on from her last Prolia injection. She may have been one of the lucky 85%. She had not heard anything back in 2016 in Perth from her GP about the risk of vertebral fractures, so was blissfully ignorant of what could happen. She's now back on Prolia at her GPs insistence.

Re the terrible issue you're having with your teeth - I was really shocked by that. Does your dentist or doctor think this situation was caused by being on Prolia for 4 years, i.e. has it been diagnosed as osteonecrosis of the jaw? I was told that ONJ was a very rare side effect of taking Prolia (but then I was also told by several medical professionals that NONE of their patients ever had any side effects (which is why mine were never believed or diagnosed!). I'm with you on the litigation front. I would do exactly the same if I were in your shoes - and will be right behind you in the class action queue if I suffer fractures, lose teeth, or have any other life-changing health problems from stopping and getting off this awful drug. Keep well and I would urge you to think through your options as given in the papers I've linked and make an informed decision - and very quickly!

So very sorry, JandoraKyani! What a terrible story! So...the endo just wanted to put you on another horrid bone med...good call, huh? These doctors are nuts, I believe. My doctor is upset with me because I won't take anything...ha! So what? You know those DEXA scans that people have are calibrated to a 30-year-old female...well...we're not 30 years old, so almost any result will show a problem. I'm a 72-year-old woman...no way will I ever take those creepy things......

AnnieW55
AnnieW55
in reply to sweetsusie

I agree. Not only are we compared to a 30yr old skeleton, no account is taken of those of us outside the “normal/average” build. So if you are petite around 5ft and under you are going to have low readings and if you are taller than average (sorry not sure but 5’9”? and above) you are going to have better readings. Also, as we aren’t generally tested until later and probably post menopausal, no account is taken of the fact that we possibly didn’t get to optimal skeleton formation in the first place.

Also I have read of Drs prescribing medication, even Prolia, when there have been no fragility fractures and DEXA results of 2.5 and even less - it really is scary out there! It’s taken me a long while but I now no longer take everything my GP tells me as gospel. Good, as they may be, they are general practitioners.

Hi, I'm so angry that you and others are having to go through this. I was diagnosed with osteoporosis in 1999 and was put on a variety of drugs over the years, having initially resisted all of them -but sadly, increased weight bearing exercise plus supplements didn't prevent further decline according to bone density scans. I now know that those scans don't indicate bone strength . Anyway, to be brief, I had the first of 6 prolia (denosumab in the UK) injections in Feb 2015 - the last one in the course was Sept 2017. All under hospital supervision. A scan indicated that I'd done "well" - what I didn't know was that this result was based on dead bone not being discarded and making it look like increased bone density. Spinal score was -1.9 (osteopoenic) so the hospital ill-advisedly (with hindsight) put me on a drug holiday with a review in a year's time. 5 months into the drug holiday, I suffered the first of 8 spontaneous rebound vertebral fractures August-November 2018. I've undergone two vertebroplasty/kyphoplasty procedures to repair the worst of the fractures but still suffer daily back pain, have kyphosis (a hump) changed body shape, loss of height and worst of all, have been designated "extremely vulnerable" by the NHS coronavirus service. In November 2018 I had a zoledronate infusion which apparently acts quickly to protect the bones. A December 2018 scan showed that spinal bone density had plummeted to -3.7. Since May 2019, I've had daily Forteo (teraparatide) injections. A male cousin who completed 5 years on Prolia, was then told that he could take it for another 5 years. He thinks that they don't know how to get him off it safely. I had no facility fractures prior to the Prolia rebound fractures. It is appalling that doctors are still administering this dangerous "medication". I joined the Prolia complaints & side effects Facebook group and what I suffered is a picnic compared to some others. Wishing you well.

Oh, 8fractures, that is a terrible, horrifying thing to have happen to you. I can't even begin to imagine the emotions you're going through, anger just being one of many, I'm sure. We place our trust in our doctors and expect them to do the right thing by us in terms of our health - and look what happened to you, and through no fault of your own. I just can't imagine dealing with what you've gone/are going through. This will have all but ruined your life. It's so unfortunate that you were put on a "drug holiday" at around the time that doctors were beginning to become aware of the prevalence of rebound fractures. Presumably your hospital doctors didn't know there was a problem back then - and you ended up suffering the consequence of their ignorance. Now that doctors ARE informed, I, like you, am amazed that they are still prescribing this drug. My new GP tells me she has about 200 patients on Prolia. I am the only one (apparently) to report any side effects and thus have had to stop having the injections. Managing my discontinuation is a new experience for her. I wonder whether she is now more circumspect about handing out prescriptions for Prolia as she must be realising the implications as she and I ran through a few options trying to find something that would have a chance of being effective and that I could tolerate. It was a time-consuming process and done while the clock was ticking. One wonders what will happen if some of her other patients start experiencing side effects and have to stop too. One of the other respondents on this page said that her doctor told her she only prescribes Prolia to her elderly patients. Presumably that is because they will most likely die while they're on it and not have to be transitioned off it, so problem solved. As a matter of interest, why did you stop having Prolia injections? Did you experience side effects?

My last DEXA results in Feb 2020 saw me back in osteopenia in both my spine (-1.7) and my total hip (-2.4), so significant increases in 2 years (from -2.3 spine and -3.1 total hip in 2018 prior to starting). You say your spinal density plummeted to -3.7 after stopping Prolia. What was it before starting the injections? I ask because I understand from reading everything I could find on the subject that the more bone density one Prolia builds up, the more that is lost on stopping. You must be absolutely devastated that the zoledronate didn't preserve your gained BMD. At least that would have been something to salvage from the disaster that happened to you. I believe that the daily 5mg Actonel I'm on now only ensures that about 40% of the BMD gained on the spine and 63% on the hip is retained - better than nothing, I suppose, and that's probably the best case scenario. However, I'm more worried about the possibility of fractures than retaining the old bone that Prolia built up. As you describe, having multiple vertebral fractures is a life-changing event and something one would never want to experience.

Fortunately, nothing has happened to me yet, but I feel as if I'm a walking time bomb, and am extremely fearful as to what the future holds for me despite being in a far better place than you. None of the GPs and the endocrinologist I've seen are 100% sure of what to prescribe and especially in the light of my bad experience on Prolia - nasty side effects which were relentless and which I didn't put down to Prolia until after my 4th injection. So the supposed gold standard zolendronate infusion is off the cards for me. There seem to be several opinions as to what course of action to take, none of them proven to work, as far as I can see. I was hoping to come across someone on this site who has a success story in getting off Prolia safely, but no-one has turned up so far. Hopefully it IS possible. If someone told me to "do this for 2 years and you'll be fine", I'd follow their advice religiously, but every supposed way of mitigating rebound fractures seems to be hit and miss at present. In the literature, they keep saying that "studies need to be done". That's not going to help us now.

Thank you so much for sharing your story, 8fractures. You confirmed for me that any thoughts I had a month ago of winging it and taking nothing but hoping for the best were downright stupid. Having 8 vertebral fractures would be the worst thing that could ever happen to one. I wish you the best for your future health. Hopefully the daily Forteo injections will be effective in building up good, healthy bone. Take care, and especially in light of your increased vulnerability if exposed to COVID-19. It must just feel like one thing after the next... Life can be a swine at times.

I am so sorry this has happened to you! The only thing we can do is to keep telling the people that we talk to and those on our blogs, that these drugs are nothing but quack science and they should all be banned!

Hi again and thank you for your sympathy & kind thoughts. I'll try to answer some of your questions. I can't remember the pre-prolia scores. All my paperwork is at home & we're currently away staying with close family who are supporting us. I had been on Protelos (Strontium Ranelate) for 7 years prior to March 2014 when the European Drugs Agency suddenly withdrew it, stating heart attack & stroke risks. So I was on an enforced drug holiday from March 2014 until a bone density scan a few months later in October 2014 showed more deterioration and Prolia was then recommended. The only side effect I was warned about was possible UTIs - but they also said that this could be because of the demographic - i.e. most patients taking it were elderly women who are prone to UTIs anyway. I had 6 injections over 3 years because at the time I was told that any more than that risked atypical femoral fractures. I didn't decide to stop Prolia - the 6th injection was the end of the 3 year course. During those 3 years, I had no side effects at all and that fact, taken with the apparent bone density "improvement" and no history of fragility fracture was probably why they thought a drug holiday was appropriate. I was told that I had "bone density to spare" so could wait a year for a review.....

What makes me so angry is that, according to latest information, the local hospital where I received the injections is still putting patients on drug holidays after they complete the Prolia course, despite what happened to me. I did contemplate legal action but the thought of years of aggravation put me off although I was advised that I had a case for clinical negligence. But it was never about money - I just wanted

to stop it happening to others. I'm currently trying to get them to change the protocol by means of the patient advisory liaison service, but everything has currently been put on hold because of the virus crisis. Anyway, I was referred to the area specialist osteoporosis clinic who organised Forteo for me. It's only a 2 year course due to the risk of osteo-sarcoma....

After that, I'll need a relay drug which will probably be another zoledronate infusion. By the way, the infusion I had in November 2018 did start working quite quickly according to blood results and (so far) I haven't had any further fractures. I was given Actonel (the once weekly tablet taken standing up) for 3 years 2005-2007 and it did nothing for me. But the infusion is a lot stronger.

Anyway, although I can't dance or swim as I used to, I have built up strength with the aid of physiotherapy, Pilates & walking. I take an amorphic (so better absorbed apparently) calcium supplement as well as vitamins D3, C, K2 & also boron as well as turmeric for pain relief.

Best of luck with everything. I try to tell my story whenever I have the opportunity because if I can save others from my fate, then it will have been worth it.

Thanks so much for all that information. It's appalling that the hospital that put you on the drug holiday with disastrous results is still doing that to their other patients! That is criminal negligence as, after your terrible experience, they must now be fully aware of the consequences of "drug holidays" and not transitioning people to a bisphosphonate should they have to stop taking Prolia. Hopefully people are being informed by at least their GPs as to what could happen (I'm not sure how your system works in the UK - you say you had your injections at your local hospital). My now ex-GP stressed the importance of not missing an injection when I saw her to have it administered, but she never explained why. The endocrinologist at the hospital who prescribed Prolia for me also never said a word about the possibility of rebound fractures on stopping. I wonder if she is telling her patients now as I did question her as to why she didn't tell me. So much is at stake when withholding critical information like this. I would never have started this drug if I had been made aware that this could happen.

It's interesting that your course of Prolia was only for a definite period of 3 years because of the risk of atypical femoral fractures. Here in Australia it seems that people are put on it indefinitely. A friend of mine who had her first injection in November 2019 was told she'd need to be on it "for life" (so at least her endocrinologist was more forthcoming than mine was 2 years earlier). I understand that Prolia has only been proven to be "safe" for 10 years but, when I questioned the endocrinologist as to what all the people who had been on Prolia for 10 years were going to do in terms of stopping it without experiencing fractures, she said that by that stage they would have done more trials proving that it was safe for them to be on it for 20 years! Well, I for one am so happy that I was forced to stop taking it because of the side effects, so a blessing in disguise in a perverse way. I feel that I have possibly dodged a bullet further down the track when having to stop because most likely more damage is done the longer one is on it. As you say, the bone density is improved on the DEXA scan, but the quality is poor. I'm sure this effect must multiply the longer one is on Prolia until the bones are like sawdust.

I asked about your BMD scores because I understand from some of the published papers that the worse one's bone density was to start off with and the greater the degree of improvement, the higher the chance of rebound fractures. That doesn't put me in a very good place as I've had a total of 14.9% increase in my overall hip and 7.9% increase in my spine. So I wondered if your position was similar.

It sounds like you have a long road ahead of you - I do sympathise. But thank heavens that you haven't had any more fractures - the Forteo injections and zoledronate infusion must be working. I really appreciate the time and effort you're putting in to getting your story out there as most people just blindly do what their doctors tell them to, and don't do their homework. So you are doing us a great service. Now that I am informed, I've passed on a lot of the papers I found and also the links to this site to my friend who was due to have her second Prolia injection yesterday. Of course I couldn't advise her but made it very clear what the possible consequences are - and the fact that, after only one injection, you can walk away without risking rebound fractures.

All the best and I will continue your good work by passing on the message - loud and clear!

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