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 profile image
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.

92 Replies

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 profile image
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 profile image
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.

Burns848 profile image
Burns848 in reply to Jhnard

What is sc?

Arcadia10 profile image
Arcadia10 in reply to Burns848

Strontium citrate.

ROSAdmin2 profile image
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 profile image
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 profile image
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 profile image
Arcadia10 in reply to ROSAdmin2

Thanks, I'll do that.

Arcadia10 profile image
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 profile image
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 profile image
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 profile image
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 profile image
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 profile image
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 profile image
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 profile image
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 profile image
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 profile image
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 profile image
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 profile image
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 profile image
Arcadia10 in reply to andie55

Sorry, Andie55, I am revisiting this thread and see I didn't reply to this message for some reason. When you say you went "cold turkey", presumably you haven't had any fractures after stopping Prolia. How long were you on it for? Are you on any of the other osteo drugs now?

Arcadia10 profile image
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 profile image
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 profile image
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.

JGBH profile image
JGBH in reply to Arcadia10

Hello, have just come across your posts and wonder if you could give me further information. What is ONJ? And how can I access Lamy’s Papers?

I was put on prolia many years ago, was not aware nor told of any serious problems regarding this drug. About 2 years ago I had to have intensive dental treatment. Root canal and more. So i waited 6 months after my last injection and stopped prolia so that dental work could be done. It lasted for a long time. I didn’t know, nor did the nurse who gave me the injections tell me it was dangerous stopping prolia.

For the past year I have had difficulty walking, pain in groins and dreadful lumbar pain. X-rays showed I have problems in the lumbar spine area. I have shrunk in size.

My doctor suggested i restart prolia! I refused, saying I would try to help the osteoporosis by my diet. However I am very scared I will have (or perhaps have had already) small vertebral fractures and other fractures. I am petrified. I have had rheumatoid arthritis since my late 30s, am 74 now. Am on strong immunosuppressants and steroids. I also have hypothyroidism and other autoimmune problems.

At the end of 2017 and in 2018 I had total knee replacements and the biologic drug I had to help slow down the RA stopped working, having work very well for over 17 years. Since then I have been put on 2 different biologics, one didn’t work and the present one is helping but I still have much pain and my mobility is so reduced! It scares me. I used to enjoy heavy gardening which I cannot do anymore, not even simple gardening. Can’t clean my house anymore either. Yet, I used to be very active.

Sorry about this long post but wonder if you could give me ideas of what to do? I live in the UK. Thank you for helping if you can.

Do hope you can resolve your problems... so difficult for us all.

Arcadia10 profile image
Arcadia10 in reply to JGBH

Hi - I am so sorry that you are having so many issues and so much pain, JGBH. I don’t know anything about rheumatoid arthritis, but have learned an enormous amount about Prolia in the past 6 months. I am very concerned that you stopped it to have your dental work done and are now having painful back problems, have shrunk in height, etc. One cannot safely stop Prolia injections without transitioning to a bisphosphonate as there is a 5-15% chance of rebound fractures occurring in the vertebrae in particular within a very short space of time after the last missed injection. My concern is that this might be why you're in so much pain, have shrunk in size, etc as your x-rays appear to show an issue. Do they show fractures? If I were you, I would IMMEDIATELY consult a good GP or endocrinologist and INSIST on having further scans done of your spine. I live in Australia and these procedures are readily prescribed by a GP, especially for a patient who has discontinued Prolia. My neck and shoulder started aching when I first took the bisphosphonates, and my GP sent me for an x-ray the same day! It is now acknowledged by the global medical profession that multiple spontaneous vertebral fractures are a very real danger and your doctor should be aware of this and be monitoring you. Another issue is the groin pain you mention. This can be indicative of a femoral fracture occurring, and needs to be x-rayed immediately. Please do not suffer by remaining undiagnosed! Something must be seriously wrong for you to be having these painful problems. If the NHS can't or won't help you immediately, I would suggest you "go private" (as my niece in the UK calls it). Please do not delay.

ONJ is osteonecrosis of the jaw. Denosumab (Prolia) and the bisphosphonates are known to cause this horrible condition where the jawbone does not heal after any invasive dental work eg. root canal, extraction, etc. This is because the drugs compromise the blood supply to the jaw, as far as I understand. As I am now on a bisphosphonate to get me off Prolia without fracturing vertebrae, my dentist is very unhappy and has said that he won't be doing any invasive work on my teeth while I'm taking it. Luckily I never have anything more than a 6-monthly scale and polish - and intend to stop the bisphosphonate as soon as I am confident that my bone turnover has been suppressed enough for me to be beyond the fracture danger period. ONJ seems to be more prevalent the longer one is on these drugs, although I read recently of someone who developed it within 3 months of starting Prolia.

Olivier Lamy is a Swiss professor at the Lausanne University Hospital. He wrote the definitive paper on getting off Prolia called "Stopping Denosumab". Here is the link: researchgate.net/publicatio...

I emailed him in May to confirm that I was doing the right thing using risedronate (Actonel) as a relay drug after Prolia, and he said that the most important thing is to keep testing the bone turnover markers frequently. One of the tables in his paper gives the protocol to follow which he has devised. I'm not sure what you would do as you have now been off Prolia for some time, by the sounds of it. As I said, you need expert medical care, and quickly.

I hope this helps and please don't hesitate to ask any further questions. This forum is a wonderful source of information and support, and I'm sure others will give you their opinions as well.

How long had you been on Prolia, by the way, and when was your last injection ?

JGBH profile image
JGBH in reply to Arcadia10

Hi, Thank you so much for your quick and most informative reply. I rely appreciate it. I will read the link you have indicated regarding Prof. Lamy and make notes. The trouble is when one has so many thing wrong it takes ages to do research. Believe me I am always doing research but somehow got tired doing research re: Prolia. However, having seen such a decline in my health and walking ability and ability to do anything. in general, plus the X-rays last year showing problems in the lumbar area of my spine made me realise I must try and find out more about the danger of Prolia. No doubt too late now! Yet no one forwarned me. Dsgraceful! Yes, I did eventually found out what ONJ is, but thanks for explaining. I knew and forgot and panicked while ready about how worried people were about this serious problem.

I have been off Prolia for 3 years. I came off it (after a period of 6 months when another injection was due so that my dentist could open up my upper gum on one side in order to do a root canal job and remove some pretty nasty infection (a previous NHS dentist had done a pretty shoddy job when he replaced one tooth, what a mess he made of it, and it took several years before I realised something was wrong and I found a good private dentist. He was horrified. It took quite a few months of work to clear the problem then remove the tooth and eventually put in a new tooth. I think I was lucky to have found this dentist because I feel I probably avoided getting ONJ.

I started Prolia in 2013 and stopped it in 2017 to undergo necessary dental treatment. So it's now over 3 years since I had the injections. I cannot be on a bisphosphonate because I have a hiatus hernia and suffer badly with GERGS and have been on Omezoprazole for a very long time. So I wonder what I could do? My GP keeps on saying I should have a treatment for osteoporosis because a fall could be dangerous for me (true). I have explained my concerns but I don't think she really knows enough about this and have been referred to the osteoporosis clinic at the local hospital but my appointment has been temporarily cancelled because of the pandemic and I am in the high risk patients, shielding. I can imagine they will advise me to restart a treatment, which I do not want. I will say I would rather try the diet route, although I already eat a very good diet, but have problems of absorption. Furthermore, I don't think the osteoporosis clinic at the hospital is any good... from past experience. I understand there were 2 endocrinologists working there but they have left to go to work in Australia (better pay, lesser workload and more free time), so not sure who is left there. It is difficult finding a good private consultant, meaning I might have to travel quite a distance. Some days I just don't feel well enough and in so much pain that travelling would not be possible and I only drive locally nowadays. I live alone, so not easy. Travelling by train at the moment on any public transport really is out of the question because of the pandemic and my shielding status. Still I will need to find a way. I am most worried. What speciality of consultant should i look for? Endocrinologists or? I don't think fractures were seen on the x-rays, but to be honest I don't trust them. I had to request xrays many times and it was only someone who assisted my orthopaedic surgeon (now retired) who made the request when I went to see her as a follow up post knee replacement operations. She's not a doctor but is the only one who has tried to help me. This is quite shocking, she could see the pain I was in.

You mentioned your niece, which part of England does she live in? Many thanks again, I truly appreciate your support.

JGBH profile image
JGBH in reply to Arcadia10

Hello again Arcadia. I have reread your reply. The GP and nearly all doctors use my RA as an excuse for all the pain I suffer! Easy for them to tick a box. Of course, RA makes the situation worse as it progresses over the yeats but I KNOW there is something else going on. They have closed mindsets. It's really hard battling with them. It seems I have always had to fight for treatment, etc. I am getting tired of doing so, it's exhausting on top of the illnesses and one should not have to get a correct diagnosis and relevant treatment. I have seen many private doctors over the years, not always a success, unfortunately.

Would you be able to give me Prof Lamy' s email address? Perhaps by pm if you prefer? Unless it is indicated in the link you have sent and will read in a little while.

Thanks again and I hope you will come off the bisphophate treatment safely. Take care.

Arcadia10 profile image
Arcadia10 in reply to JGBH

Hi again JGBH - seeing that you've been off Prolia for over 3 years now, I think you'd be way beyond the rebound fracture danger period which I understand from Lamy's earlier paper on the subject is from 9-16 months after the last Prolia injection. This is not to say that you haven't had any rebound fractures and, judging by the amount of pain you're in and the loss of height, you might have had. So this is what you need to find out in order to have the pain and any fractures managed. I'm not sure what can be done to repair fractures as surgeons found that it turned out to be a problem repairing multiple vertebral rebound fractures by vertebroplasty or kyphoplasty as the repairs immediately caused fractures of the adjacent vertebrae. However, I think you're past all that now but, if it has happened, it requires investigation and management.

There is still the ongoing osteoporosis problem - and this is complicated by your other health issues. An endocrinologist deals with osteoporosis issues and would be able to advise you on any medication he/she thinks necessary depending on your T-scores from your most recent DEXA scan. Would you mind me asking what these are? Your GP should be managing your referrals, though, telling you where to go and who to see, but I understand this is somewhat different in the UK to Australia. My niece in Surbiton tells me that she sees a different GP each time - just the next GP available at the time and he/she refers to the notes left by the previous GP she saw, which isn't ideal. Here I have a regular GP who knows who I am when I walk in, is across all my medical issues, and makes referrals accordingly. So I'm not really sure how you go about getting a referral there. All this is complicated by COVID-19, not being able to travel easily, etc. If you are shielding, can you get a telehealth consultation (over the phone) first with a GP and ask about a referral to an endocrinologist (also telehealth)? We had telehealth consultations here for a couple of months and I found they worked very well and were very convenient. The other person I would consider consulting is a rheumatologist for the RA. There is a bit of an overlap there from the osteoporosis point of view as I saw one here for several years at one of our teaching hospitals after I was diagnosed with osteoporosis. Again, a GP would presumably have to refer you.

I'm not sure how the NHS works as it is completely public but I think your problem in getting a definitive diagnosis and being referred to the appropriate medical professionals stems from the fact that it's not a private system where one pays for a consultation and hence can choose a medical professional and get referred on very quickly. But I think this is key - to get x-rays, scans, whatever it takes to be properly diagnosed. You have a lot going on with your health and it may all be connected, I don't know. This is where a good GP should be directing operations! Please try to find one to help you.

So I think you can probably stop worrying about the Prolia side effects as they would be long gone after 3 years. Luckily you appear to have escaped the ONJ despite extensive invasive dental work, so you are fortunate. So the issue now is the way forward and that largely depends on your bone density. I do sympathise, JGBH - having multiple medical problems when on one's own is not very nice at all. I'm in a similar situation and find that friends lose interest in health problems very quickly and there is little ongoing support. Have you thought of contacting the Royal Osteoporosis Foundation, by the way? One of the nurses saw my post on this site and suggested I do so. I emailed them to ask a specific question about which drug to take to help me discontinue Prolia safely and they were very helpful and replied to my email at great length despite not really being able to provide a definite answer. Here is their address: helpline@theros.org.uk but you can always phone them. The other thing I thought of (as I see you haven't yet had any replies besides mine) is to start a new topic of your own with your specific questions about where to get help in the UK, your RA and the possibility that you might have fractured after stopping Prolia. People on this site are very kind and helpful as well as being knowledgeable as they have often been down a similar path, so can speak from experience.

Look after yourself and all the best!

JGBH profile image
JGBH in reply to Arcadia10

Hello again Arcadia

Thank you so much for taking the time to reply to me once more in depth and with so many helpful suggestions. You’re brilliant and you make me feel better because I have been feeling pretty low recently.

I do have an RA consultant, had one since this began in my late 30s. However, she’s will be retiring soon and has “passed me over “ to a new consultant whom I saw in January. I was due to see him again in April. Of course this has now been postponed. I have been in touch with the RA nurse a few times but I really need to see the consultant. Will write to him to explain what’s happening. The trouble with them is they keep saying my RA is not well controlled... but I know there’s something else going on. So it’s going to be tough trying to make them look out for the problem....

I will request MRI scans on my lumbar spine to see if there have been any VFs. I think this has happened. Can’t be seen on X-rays.

You mentioned the importance of testing the bone turnover markers (as recommended by Olivier Lamy in his most interesting paper which I have read). Do you think it might be a good idea if I requested such a test, although it’s a while since I stopped prolia? What does this test involve? Is it just a blood test? After all, fractures are supposed to happen between 9 and 16 months post prolia discontinuation... and in my case it seems they happened much later... of course they could have happened before without my realising because of other pain.

I did have a DEXA scan a while back but can’t find my test results at the moment. I will look for that and let you know. However I remember a change in the scores, especially in one hip as well as in lumbar vertebrae. Definite signs of osteoporosis.

I manage to see the same GP nearly every time because I explained to her it would be better for me, the patient and for her too. I have phone consultations with her when needed. She is kind but it’s difficult here in the UK to get things moving if one is old and has multiple health issues. They basically don’t want to spend money on older people!! Quite shameful. So I have to write to them, putting pressure on them (not nice but necessary if one wants to get somewhere, and it takes ages).

She kept saying “what do you expect at your age and having had RA plus other problems for such a long time “! As you can see it’s not easy. They write you off! So it always takes so much energy I don’t have and perseverance.

So I need to make another appointment with her and try to push things forward. I am so worried I will lose my mobility soon. I walk slowly like a very old woman!!

Please let me know what your results will be. Hope you can get away without any VFs.

Thanks also for the email address of the Royal Osteoporosis Foundation. I will contact them.

Having read Lamy’s paper, I have found his email address so will contact him, asking for advice. I also read many other papers till my head was “over-buzzing” with information.

Because I have so many problems I used to do much research but needed a break from that. I only wish I was made aware of the danger that is prolia earlier on. It’s incredible that doctors still push this nasty drug onto patients now that they know how dangerous it is.

Hope you’re keeping as well as possible.

Many thanks again.

Take care. xx

Arcadia10 profile image
Arcadia10 in reply to JGBH

Hi JGBH - I'm only too happy to help if I can with my limited knowledge. I know how difficult it is to manage health problems when not being supported by medical professionals, and it can be very lonely and frightening not to be able to find out what is wrong, especially when one is in pain and knows that there is something not right. I started reading online extensively when I realised that getting off Prolia was a major problem. I felt very let down by the endocrinologist who had put me onto this drug 2 years ago and hadn't told me about the rebound fracture issue when discontinuing it. When I queried her as to why she hadn't informed me before starting Prolia, she was clearly disinterested and got quite snappy with me on the phone afterwards when I called her to discuss the medication she recommended. I obviously had nuisance value in her life and she wanted shot of me. That's when I realised I was on my own in this and Googled until I found this site which has been a wealth of information and support. I've also come to realise over the years that doctors, even specialists, don't know everything, and we can't just accept what they tell us. I now check everything. Luckily here in Australia we can just change doctors or specialists if we aren't happy with the person we're seeing. I've done so several times. We have to be our own health advocates and just keep pushing for answers.

But that doesn't help you. The NHS sounds like a lumbering bureaucracy to me (but I might be being a bit unfair there). They have no right to consign you to the scrap heap because you're "elderly". 74 is definitely not elderly! You're also on top of the tech stuff as here you are online, so congrats to you! And, regardless of their attitude, you have a right to appropriate medical diagnosis and treatment. Were you happy with your new RA consultant when you saw him? Do you think you could phone to ask him to do a teleconsultation (which might happen sooner than if you wrote to him or waited to see him in person)?

Bone turnover markers (BTM) are blood and urine tests that detect products of bone remodelling to help determine if the rate of bone resorption and/or formation is abnormally increased, suggesting a potential bone disorder. I normally have them done annually just before my DEXA scan to see how things are tracking with my calcium, parathyroid and vitamin D levels but, more importantly, the NTx, which is a bone resorption marker. If this becomes elevated, there's a problem. I've noticed that a lot of other people mention their CTx level which is measured in the blood. The NTx is measured in the urine. They test for either, but not both, depending on which lab takes your blood (in Perth, Aus, at any rate). I don't know if one is better than the other. If the bone resorption or NTx/CTx goes up to beyond acceptable limits, it indicates that the bone turnover is not being suppressed, i.e. drug treatment is not working for some reason or, if treatment is not yet being given, that maybe it should be considered. Because I am now at risk of rebound fractures subsequent to discontinuing Prolia, I'm currently having my BTM tested 6-weekly to make sure the bisphosphonate I'm on is doing it's job in suppressing the bone turnover. Presumably there's a correlation between bone turnover and bone density, but I'm not sure of that as msw67 posted below that, despite being on a relay drug to get off Prolia safely, her bone density has disappointingly reverted to pre-Prolia levels despite her CTx being adequately suppressed. Read more here: labtestsonline.org/tests/bo...

Anyway, it sounds as if you're not having these tests done, and I'm surprised by that. It doesn't matter whether you're on any osteoporosis medication or not or when you had your last Prolia injection - the BTM test gives you the inside chemical picture on what is happening in your body in areas affecting your bones at this point in time, irrespective of any drug you might be on or have stopped. I had my BTM done at least once a year after being diagnosed with osteoporosis and before I started on Prolia to see how things were tracking (as I had refused medication). I would think that these tests are very important for you because you're not currently on any medication for your osteoporosis and I've also read somewhere that your bones can return to a worse state once Prolia is discontinued than they were before starting it. So, if I were you, I'd want to find out what is going on. Presumably you're having a DEXA scan every 2 years - is that correct? I think that's the standard frequency. So you wouldn't know that's happening to your bone density in between scans without having your BTM tested. Maybe things happen differently under the NHS but, again, your GP should be taking charge of this. Hopefully she will be amenable to your suggesting you have your BTM monitored or can tell you why she won't order it.

I don't know whether it's worthwhile contacting Prof. Lamy. The poor man is probably rueing the day that he added his email address to his published papers! I think he probably gets a lot of panicked people emailing him to ask his advice on rebound fractures. You're far beyond the post-Prolia rebound fracture danger period, and what would have happened has most like happened. So now it's a matter of finding out what DID happen, if anything, and managing it. I don't know anything about RA, as I said, but you seem convinced that your pain and other symptoms wouldn't have been caused by that. So I would push for every possible x-ray, scan, MRI etc on your spine as soon as possible to find or eliminate VFs caused by Prolia. If there are none, well and good, and you can look elsewhere for the cause of the problems. I would also contact the ROS for advice and guidance, as I suggested.

I do really feel for you, JGBH. This is a terrible situation to be in, in pain and finding it difficult to get around, and then not getting speedy medical assistance. But just keep pushing, phoning if necessary. As we say here: "The squeaky wheel gets the most oil". I know how difficult it is being on one's own too. Sometimes everything just gets overwhelming. However, there's generally an answer out there somewhere. One just has to persevere and find it!

JGBH profile image
JGBH in reply to Arcadia10

Hello Arcadia,

Apologies for my late reply to yet another very useful and informative post, plus your understanding.

As you stated, the members of this group are incredibly knowledgeable and most helpful as well as supportive. I do appreciate that like most of us in need of further knowledge and compassion.

I have been/am having a tough time with my eyes (uveitis - Sjorgen's syndrome) so I had to go to see the ophthalmologist of my local hospital. I phoned them yesterday morning and was asked to go early afernoon... I was quite nervous because I haven't set foot in the hospital since the lockdown in March, but needs must. I felt quite stressed by it all. Wearing a mask of course, but... Anyway am trying again a course of steroid eye drops for 3 weeks, so let's see if it will help. I DO hope so becayse it's most difficult coping with this situation.

On Monday, I will phone my RA nurse because I have other problems to discuss as well. Unfortunately, the nurses' knowkedge is limited (although some of them do know a lot, of course). I am not sure whether my new consultant will be there. He comes from Leicester - where there is a large cluster wave of the virus, consequently the city is under total local lockdown as the lockdown rules are being relaxed (much too soon, like reopening pubs and restaurants and hairdressers as of tomorrow) nationaly. So I would think he won't be coming to my hspital just at the moment.

I only saw him once, in January and was due to see him again in April, this had to be postponed till... ? I liked him, but I don't know yet how able he is, not sure how much experience he has of RA, probably very little or no experience of osteoporosis. So that's a concern. However, I will ask to have MRI of my spine and of femur to check for any small fractures of bone. I will also request bone markers tests. This has never been done, neither mentioned to me.

Although the NHS is quite a remarkable institution, it does not really look at prevention - saving money they think, when in fact it costs a lot more when serious problems arrive and of course affecting the patient's quality of life and often patients die prematurely. Private medecine is expensive, so it's ok from time to time but not on an on-going basis, especially if one has a complex medical history. Unfortunately, once one reaches retirement age they are not keen to spend more money on you. It should not be the case but it is. They also like to put any problem of pain or with mobility down to my RA, as I said previously. It's easier for them to tick a box, job done, regardless of my problems. But I know there is something else going on, not that I want to have anything else wrong but I know there is another problem and I need to know, even if nothing or little can be done for it. It's always an uphill battle to get things done. I hhave to request blood tests, etc fro my GP otherwise very little would get done. There again, saving money. GP surgeries in the UK have become businesses, so a money making machinery. The less they spend on patients the better for their financial situation. It's not the sort of medicine that was practiced, say 30/40 years ago. As for changing GP/practice it's not really an option when one is getting older, in much pain and living alone because I can just about drive myself to my surgery but going to another village/town would not be possible when I feel really unwell. Also, the attitude would be very much the same. So one has to push all the time. Not easy when one feels exhausted and unwell.

To be honest, I can see I haven't been monitored very well for the osteoporosis, either by the GP or the osteoporisis clinic of the hospital. They did not have anyone really good there for a long time and then, I understand they had 2 endocrinologists who hhave now left to go and work in Australia! So not sure what the situation is, so more phoning to be done. However, I am quite reluctant to have to go to the hospital because it is not safe for me yet: am shielding because I am on immunosuppresants plus steroids, so a double whamy! Should I get the virus I would be "toast" as a young medic told me, so has my GP. I had Dexa scan a while back, perhaps 1 year ago or so. I had not had one for nearly 5 years. I had to request it from from rheumatologist. Will give you the T scores when I find them.

As you quite rightly said, when alone and in pain and having to fight for everything is does become overwhelming!

Thanks again for the help and advice and kindness. take care.

Arcadia10 profile image
Arcadia10 in reply to JGBH

Hi again JGBH - I'm sorry, I hadn't considered that you might not be in or close to a town or city so, yes - being in a village would limit your medical options to a large extent. As I live in a city, I just take it for granted that I can switch to another healthcare provider if I'm not happy with the one I'm seeing. Unfortunately, it would appear that's not at all easy for you to do. I'm not sure what the answer is there.

Thanks for explaining a bit about how the NHS operates. Good basic public health for all is wonderful, but it's the complex cases which require specialised treatment which appear to be falling through the cracks. Also, age should not be a factor in deciding who gets treatment and who does not. All I can suggest is that you read as much as you can about what SHOULD be happening in your case management, and have a conversation from an informed position at your next appointment. Finding out whether you have any fractures of your vertebrae is of paramount importance. You were on Prolia for 4 years, and the undiagnosed rebound fractures, if you had any, could be the reason for your pain. Here is a link to Prof Lamy's initial paper describing the rebound fracture problem: academic.oup.com/jcem/artic... Perhaps if you cite this paper over the phone or take it in with you next time you see your consultant, they will take your concerns seriously and investigate further. Once this has been sorted, it would be useful to find out what your bone turnover markers are (NTx orCTx) so that, in combination with a DEXA scan, your osteoporosis can be monitored and managed.

Perhaps you could ask your RA nurse when you phone her on Monday whether you could have a telehealth consultation with your rheumatologist. At least you could then explain your concerns to him without actually having to go to the hospital. He would be able to order the scans and tests for bone turnover markers if you don't want to ask your GP to do this.

I'm sorry to hear about your uveitis on top of everything else. You must feel as if you're drowning at times, but persevere - one thing at a time.

Do let me know how things go and also what your T-scores are when you locate them.

HeronNS profile image
HeronNS in reply to Arcadia10

Actonel is a bisphosphonate. It's a name for risedronate.

Jhnard profile image
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 profile image
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.

msw67 profile image
msw67 in reply to Jhnard

I have the DXA results and the spine is -2.0 which is where it was (-1.9) in 2015 before starting Prolia. The year on Fosomax did not preserve the bone density gains in the spine -1.1. The hip T-scores are where they have been for the last 10 years.

Arcadia10 profile image
Arcadia10 in reply to msw67

You must be disappointed that your BMD has reverted to the pre--Prolia levels, msw67. However, the good thing is that you haven't had any vertebral fractures and your bone turnover markers haven't increased dramatically, so the Fosamax is obviously working in suppressing the bone turnover. I would have thought that there would be a correlation, i.e. suppressed turnover (as indicated by your CTx scores) = retained BMD, but clearly not. Are you going to go back onto the Fosamax once the heartburn issue has resolved?

I had my baseline metabolic bone study tests done on 8 June and get the results from my GP tomorrow. Hopefully the Actonel daily 5mg tablet will have been effective in suppressing the bone turnover for the past 3 months. Crossing fingers...

msw67 profile image
msw67 in reply to Arcadia10

Disappointed, yes. I thought I was doing everything right. I had along video chat with my doctor yesterday and she wants me to start reclast infusions in the hopes of preventing further declines. Obviously she says Fosomax was not being adsorbed sufficiently as perhaps the increasing CTx values may have indicated. Good enough to prevent fractures but not maintain bone density. She offered 2 more Prolia injections followed by reclast this time, as she said studies show a more rapid increase after cessation, but I am not going that route. And I'm still on the fence regarding reclast now. Hoping the Actonel is working for you. Let me know.

Arcadia10 profile image
Arcadia10 in reply to msw67

Yes, a difficult decision for you to make re Reclast. I've read a few published papers on it as well as patients' experiences in terms of side effects and personally want to avoid at all costs. It's very potent, hence the preferred first-line treatment to prevent rebound fractures. It seems to be the worst for causing ONJ, from what I've read. Being an IV drug which lasts for a year, one is also stuck with any side effects for a long time. A lot of people don't seem to have any problems, though - just the luck of the draw. Regardless, the best thing is that you're a year off Prolia without any fractures. That's a significant achievement!

My metabolic bone study results weren't ready when I saw my GP today, so I'll post on Tuesday when I see her again.

Arcadia10 profile image
Arcadia10 in reply to msw67

I've just got my metabolic bone study results and - thankfully - good news. The Actonel 5mg daily is obviously doing its job as my NTx is <20, which is where it was when I was on Prolia. Prior to starting Prolia, it was up to 64. The cynic in me says that maybe there's some residual Prolia effect suppressing my bone turnover as it's only been 3 months since my missed injection, but time will tell. My next metabolic bone study will be in 6 weeks' time, so that will be a good indication if the turnover is going to stay low on the Actonel. My doctor was really happy and said: "Just keep on doing what you're doing".

What did you decide to do regarding the Reclast?

msw67 profile image
msw67 in reply to Arcadia10

Good news indeed on your NTx. Preventing rebound is key. I'm still debating the Reclast infusion and bummed about my loss of bone density.

Arcadia10 profile image
Arcadia10 in reply to msw67

I do sympathise. Losing the bone density you'd gained in your 3 years on Prolia is a swine, especially with the rigmarole involved in getting off it safely. One would hope for at least some improvement to have made the whole exercise worthwhile. Good luck making your decision. Keep me posted.

msw67 profile image
msw67 in reply to Arcadia10

What I've learned is that no one really knows how to preserve bone density after Prolia. Luckily my spinal T numbers are not horrible -1.9 but I am still hoping not to fracture and to not lose more bone density. The Lamy article would suggest that I should go with the Reclast now.

Arcadia10 profile image
Arcadia10 in reply to msw67

Something occurred to me that might help with your heartburn issues, msw67, and your subsequent inability to continue with Fosamax. Of course, you might have already decided to go with the reclast infusion, but I'll throw this into the mix. There is a weekly enteric coated version of risedronate which apparently only starts to get absorbed once it is in the large intestine. Would this not solve your heartburn problem and still work to prevent post-Prolia fractures? I am in the process of giving it another go instead of the daily 5mg risedronate which have turned into a bit of a nuisance to have to take each day, so it jogged my memory about your immediate problem with heartburn.

msw67 profile image
msw67 in reply to Arcadia10

Thanks for sharing that. I am still cogitating about the reclast and might suggest that. I am trying to get a second option from another endo, but I think treatment plans are pretty varied and no one knows for sure what will prevent rebound.

Arcadia10 profile image
Arcadia10 in reply to msw67

meganisi on this site has been on Actonel (risedronate) EC weekly 35mg for 18 months until May. No rebound fractures and CTx within acceptable limits. I'm hoping she'll update with her DEXA results when she has them - later this month, I think.

Arcadia10 profile image
Arcadia10 in reply to msw67

It's been a while, msw67. What did you decide to do in the end regarding the reclast or having more Prolia shots? Did you get a second opinion from another endo?

msw67 profile image
msw67 in reply to Arcadia10

So I am still taking alendronate. My dentist is very concerned about a reclast shot as I still have 2 unerupted wisdom teeth and wants me to see an oral surgeon first. So I continue to procrastinate. How are you doing?

Arcadia10 profile image
Arcadia10 in reply to msw67

Sorry I haven't replied before now, msw67. I've been in bed for 11 days straight with a bad respiratory tract infection - fortunately not COVID, as I got tested.

I'm still on the Actonel 35mg weekly, but struggling with the side effects which seem to get a bit worse as time goes by. I just don't see how I can carry on like this for another 12 months. I've decided to see an endocrinologist as I want to hand the management of getting off Prolia and then getting off Actonel over to someone else. My GP is very supportive of what I'm trying to do, but doesn't know herself what should be done. We're just following Lamy's protocol. I had some abnormal metabolic bone study results a few weeks back - 4x the amount of calcium in my blood than should be, and not sure why. So time to bring in a specialist to interpret. I would also like to reduce the dosage of Actonel to maybe every two weeks to see if it lessens the side effects, but then the bone turnover markers would have to be monitored frequently to see if the turnover is rebounding or not. My last NTx test was 29 (up from <20 two months prior) and I requested a CTx which was 100. Apparently low turnover markers are a double-edged sword, however. I found a paper which is a guide for dentists to be able to gauge a patient's risk of getting ONJ. 100 was top of the list - high risk, which frightens me. So allowing the bone turnover to increase a bit by taking the drug less frequently might not be a bad thing, as long as it's monitored.

So you're still on the alendronate. I hope the heartburn has settled down a bit as it must be very uncomfortable. Do you intend to try to stop the osteo drugs once the situation is more stable? I know you said several months ago that you didn't have an end game. Your bone density at -2.0 spine and -2.3 hip doesn't sound bad to me. It's more a matter of not falling, to my mind.

Hope you're well otherwise, and looking forward to the election...

msw67 profile image
msw67 in reply to Arcadia10

Sorry you are feeling poorly. I am taking alendronate again after an upper GI that showed minimal effects to my esophogous. Find I can control the GERD with occasional doses of Protonix. I haven't had a CTx for 3 months (my last number was 312), Oct 16 was the 2 year anniversary of my last Prolia shot. I do agree that a low CTX (Under 100) may contribute to ONJ and atypical femur fractures.

I am still holding off on reclast until I have a oral surgeon look at my unerupted wisdom teeth.

I will be glad when the election is over.

Arcadia10 profile image
Arcadia10 in reply to msw67

Good to hear that you have the GERD under control, msw67, so can continue with the alendronate. Your CTx of 3 months ago is within acceptable limits, so there was no apparent rebound then - good news! It'll be interesting to hear what your oral surgeon says and whether he feels he can safely remove the unerupted wisdom teeth at this stage. Fingers crossed...

I had another metabolic bone study test done this morning. I'm hoping that the excess renal calcium excretion of a month ago was just an aberration due to high doses of magnesium I was taking. This lab measures the CTx instead of the standard NTx, so it'll be good to see what that level is. I skipped once of my weekly Actonel tablets when I was so unwell, and hope that hasn't allowed the bone turnover to spike. I also have an appointment with an endocrinologist on 1 December and hope that he is across all the rebound fracture issues and can manage me off the Actonel next year. Boy, will I be glad when this is all over!

msw67 profile image
msw67 in reply to Arcadia10

Thinking of you and wondering if the actonel side effects have lessened. Approaching the 2 year mark for fosomax (2.5 years since last Prolia shot). Ctx numbers have leveled off and decreased slightly.

Arcadia10 profile image
Arcadia10 in reply to msw67

Good to hear from you, msw67, and thanks for inquiring about my side effects from Actonel. Things seem to be getting slowly worse the longer I remain on it, unfortunately. The latest issue about which I am seeing my GP today is a sensation of bubbling coming up my oesophagus and a slight feeling of choking. I've never had GERD before and understand that it causes a burning sensation, so presume it's not that. I'm having several other unpleasant digestive issues too. Hopefully she'll be able to throw some light on things, but I suspect the only solution to all this is to stop the Actonel (and any other osteo drug as I had severe side effects from Prolia too).

Other than that annoyance, I feel as if I've been in a holding pattern for the past 3 months with no testing, but that is all about to change. I'm having a third CTx test done next week (now that I've found a lab here in Perth prepared to do CTx instead of NTx) and then my annual DEXA on 2 March. My last CTx in November was 440 (up from <100) so I'm a bit concerned that there will be another large jump in turnover, but better to know than not. I expect, like you, that all the gains I made in the 2 years on Prolia will have been lost once I get the DEXA results but, if they're sitting about where they were pre-Prolia, then I think I'll be OK with it, even though I was in the osteoporosis range.

The endocrinologist I saw at the beginning of December didn't know what to do to manage me off these drugs so I went to Plan B, an endocrinologist in Brisbane on the other side of the country, with whom I have arranged a telehealth phone consult on 23 March. She has been managing a contact of mine from this site off Prolia and Actonel very successfully, so I feel very confident in placing my health in her hands. It will be such a relief to have someone knowledgeable manage this as my GP, supportive as she has been, doesn't know what to do or how to interpret the anomalous renal calcium secretion rate result I had back in Oct last year. So I've just been plodding along using Lamy's protocol as suggested by you and hoping for the best. It's now been almost 12 months since my last missed Prolia injection (Mar 2020) so I have a way to go, but hope to start weaning off the Actonel in June (so 15 months after last missed Prolia injection, which is what my contact under the care of the Brisbane endo did).

So now that you've been on Fosamax for 2 years, do you have a plan going forward? You must be relieved that your CTx has stabilised, so your bone turnover is obviously under control. I think that is the scary bit - trying to decide when to reduce the dosage and let go of the security blanket, so to speak, if that's what you want to do.

What did your oral surgeon decide to do about your unerupted wisdom teeth in the end?

msw67 profile image
msw67 in reply to Arcadia10

I have postponed the oral surgeon consult due to covid and not really wanting to get a reclast shot. My last CTx in mid Dec was 269 down from a high of almost 400. I'll get another CTx next month and then another bone density in May. What a journey you have been on. Good luck.

Arcadia10 profile image
Arcadia10 in reply to msw67

That's a great CTx result. So the Fosamax has done the job of keeping the lid on your bone turnover. Hopefully the next CTx will be similar and you're beyond the fracture danger period.

I'd be interested to know your DEXA results in May if you're happy to post.

All the best.

msw67 profile image
msw67 in reply to Arcadia10

👍

Arcadia10 profile image
Arcadia10 in reply to msw67

I've had a couple of test results last week and this which I thought I'd share with you, msw67. It looks as if the Actonel is doing what it should be, to a certain extent. My CTx is now 630, up from 440 three months ago and 100 three months prior, but still within acceptable limits.

I was really pleased that my DEXA results received today are far better than expected. I was rather dreading getting them. They have worsened, especially my spine (still in osteopenic range), but my hip is not yet back to my pre-Prolia levels:

2/03/2021 1/02/2018 (pre-Prolia)

AP Spine -2.2 -2.3

Femoral neck -3.2 -3.4

Total Hip -2.6 -3.1

My hip in 2012 when I was first diagnosed was -3.1, so nine years on, it's far better 😊. I am walking about 40kms per week and taking the supplements from the COMB study, so hopefully that has all helped.

I know you said that Fosamax had not retained your spinal BMD in the first year on it although your hip scores appeared to have been stable for 10 years. I seem to be having a similar result from Actonel in that my spinal score has worsened. So it appears that the most significant treatment affect that Prolia has is in the spine, hence the superior increase and then catastrophic decrease resulting in multiple vertebral fractures. I wonder if it's like that for other women too.

I am speaking to the new endocrinologist on 23 March and have sent her these results so am eagerly awaiting the verdict as to when I can start weaning off Actonel!

Do let me know your DEXA scores in May and stay well in the meantime.

msw67 profile image
msw67 in reply to Arcadia10

Thanks for the update. I will keep you posted on my scan results in June. (thought it was earlier). My latest CTx scores are 262, so decreasing slightly from Dec. S the Prolia rebound seems to have peaked.

Arcadia10 profile image
Arcadia10 in reply to msw67

Great that your CTx is low and stable after two years off Prolia - very reassuring. Are you planning to stay on the Fosamax?

Yes, please update me when you get your DEXA results.

All the best 😊

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...

Arcadia10 profile image
Arcadia10 in reply to sweetsusie

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.

sweetsusie profile image
sweetsusie in reply to Arcadia10

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....

Arcadia10 profile image
Arcadia10 in reply to sweetsusie

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!

sweetsusie profile image
sweetsusie in reply to Arcadia10

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 profile image
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 profile image
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 profile image
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.

Arcadia10 profile image
Arcadia10 in reply to 8fractures

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.

Arcadia10 profile image
Arcadia10 in reply to 8fractures

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!

I hope you found an answer. I'm 75 and have had two prolia injections, and "?coincidentally?" have had increased pain and issues with joints and continued slight deterioration of bones ala dexa scans. I am not inclined to continue prolia as I really believe it is mostly a marketing program designed to convince us that it is useful; very little data that this is so, but endo wants me to continue.I think I might be better off NOT TREATING osteoporosis. I had a thyroidectomy 7 yrs ago due to thyroid cancer and have had no recurrence since...but I have never felt "right" since. I am unwilling to continue prolia, but don't know if I'm 'trapped" with it still coursing through me.. Don't know what to do. Am I at risk if I just refuse, or more at risk to submit to further shots???

Arcadia10 profile image
Arcadia10 in reply to Melyn2045

This is a tricky one, Melyn2045. As you've had two Prolia shots, you will have to take a relay bisphosphonate to transition off Prolia safely, i.e. without risking multiple vertebral fractures. As I'm finding seven months down the track, this can come with its own set of issues. Some people cannot tolerate bisphosphonates and I, for one, am struggling with a few side effects. I will have to take Actonel (risedronate) for 12-18 months to be on the safe side, so am gritting my teeth and soldiering on. The alternative (possibly fracturing vertebrae) is too awful to contemplate. Nothing would make me go back onto Prolia!

If you do continue with Prolia, I suppose you have to weigh up whether the side effects you think you're having are worth the potential increased bone density. It sounds like you haven't seen any improvement yet. What were your spine and hip T-scores before you started Prolia - and now? There are also the potential long-term adverse side effects of Prolia to consider, such as ONJ and atypical femoral fractures. I suppose it's all a roll of the dice as to who is affected and who isn't.

I'm with you re these osteoporosis drugs being marketed to the physically and emotionally vulnerable as essential to prevent fractures when there is actually a vast amount of money to be made by the drug companies in doing so. So in their best interests, not ours. Most fractures in healthy, non-medicated osteoporotic women seem to occur after a fall, so the trick is to maintain one's balance as one gets older. My thoughts are that I'd rather have healthy bones and risk a fracture later in life which can then heal well as opposed to being on one of the drugs which retain the old bone (which looks dense on a DEXA) but actually is more susceptible to spontaneous fracture because of its poor quality.

So you're not really "trapped". You have a choice, but it's a difficult decision to make and your previous history of thyroid cancer and the thyroidectomy probably complicates things. I don’t know how that would impact your osteoporosis going forward and whether treatment is essential or not. Perhaps someone else on this site can provide some input.

An update 1 year later on my mission to discontinue Prolia safely:

I've now been on weekly Actonel (risedronate) for almost 12 months. My missed Prolia injection was 10 March 2020. My bone turnover as indicated by the CTx blood tests is being suppressed to within acceptable limits, up from 100 in Aug 2020 to 430 in Nov 2020, then 630 in late Feb 2021.

My DEXA in Feb 2021 shows that my bone density has not quite returned to what it was prior to starting Prolia in Mar 2018 - an unexpected surprise. My hip and forearm density have remained stable, but my spinal density has decreased by 6% . However, my spine is still within the osteopenic range which I'm happy about, and my overall hip is just into the osteoporotic range.

I am now under the care of a knowledgeable and supportive endocrinologist on the other side of the country with whom I've had a telehealth consultation. She has already managed a contact of mine from this site off Prolia and Actonel, so I am confident in placing my care in her hands. She noticed something unusual in my CTx results, notably that in Aug (5 months after my missed Prolia injection), my CTx was still very low at 100. I had thought that was a positive and neither my GP nor previous endo I consulted flagged it as being a problem. It appears from this result that my bone turnover hadn't yet started to increase, despite my being off Prolia for 5 months. Her interpretation of it is that there was some residual denosumab in my system 5 months after the missed injection which was suppressing bone turnover. This unfortunately means that the process of getting off Prolia safely really only starts from that date, not from the date of my missed injection in March. That was disappointing as I was hoping to start weaning off the Actonel within the next few months. I now have to have another CTx in July and review the situation then. My aim was to be off Actonel and drug free by end 2021. Doesn't look like that's achievable now.

I am convinced that one's bones can be improved by exercise and diet, and that prescription drugs are unnecessary - in my case, at any rate. I eat a healthy Mediterranean diet and walk about 30-40kms per week. I am taking the supplements mentioned in the COMB study (boron, magnesium and vitamin K2 along with zinc and vitamins B complex and C) and get enough vitamin D from exercising outdoors in our sunny climate. Hopefully this time next year I will be off these horrible osteoporosis drugs for good and one of the success stories in getting off Prolia safely.

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