I would say to ring the helpline MayGodBlessYou but I note you are in Australia. I have asked one of the nurses and they report according to the data the point of taking the meds is that it significally reduces the risk of fractures. But no drug on the plant works by 100%. They tell callers its like taking a drug to bring down blood pressure so reducing the risk of heart attacks and strokes but some people will still have this happen even tho they took blood pressure meds. So this drug will not stop all of the fractures. But from the data it looks like it reduces the risk of fractures by as much as 70% Without the drug the nurses get lots of callers who choose not to take them and they continue to have fractures in their spines and else where in the body. I hope this helps. I am sorry to hear about your mum!
Was your mother possibly late in having her most recent 6-monthly Prolia injection? Multiple vertebral fractures can start as early as 3 weeks after missing a Prolia shot. Prolia has to be administered every 6 months almost to the day without fail.
i'm dismayed if that's what's happened, but i hope not. i agree there shouldn't be any delay.
Mum had a tooth extraction - cracked tooth - i would say from the effect of prolia -
that was when she was due to have a dose.
dentist said wait 2 weeks after dental surgery then dose,
endo said up to 4 weeks,
she picked 3 weeks.
in the meantime, a week after dentist she lifted a box that might've been 4 pounds and carried it too far, which caused the current compression, or added to it as it probably started months or so before.
and now 2 months after that injury, some more pain that dr says could be fracture, ligament, or muscle;
Do you mean the dentist said to wait two weeks until after the extraction to have the next shot (and the endo said to wait four weeks after the extraction)? If that is so, your mom had the extraction six months after the last Prolia shot, then waited a further three weeks (her choice) until she had her next shot. So she was three weeks late. That might have caused the fractures (precipitated by heavy lifting). She needs to have an MRI to see what is going on.
I agree with your assessment of Prolia. I was on it for two years and had five fractures trying to get off it using bisphosphonates ☹️
Yes................just read the class actions........prolia and then the precurser which was fosamax.........all the data says "don't stop prolia" since you can be worse off than before. docs should know this....................
I came across someone on this site (also in Australia) who had stopped Prolia after 10 years, using Prof Lamy's protocol to get off it safely. So it can be done. The thing is that your mom was (hopefully) assessed as being at high risk of fracture before being put onto Prolia and this is probably still the case. Is there any particular reason why you think she should stop? If she does, she will have to take a bisphosphonate for over two years, either oral weekly (which most elderly women would not comply with) or the annual zoledronic acid infusion which is really potent and can cause intolerable side effects as it's in the system for a long time after the infusion, unlike the oral tablets which can just be stopped if necessary.
The issue at present is the fractures. I'd try to find out why they've happened - and prevent further fractures. Presumably the cause might be the three-week delay in having her bi-annual Prolia shot. You need to find a good endocrinologist to assess the situation (not easy).
That's interesting that the doctors are saying that Prolia isn't working for your mom. Do you have her DEXA results? If you do, you would be able to see for yourself how bad her osteoporosis is - and what the change is from one DEXA to another. You don't give her age, but one's bone density generally deteriorates with increasing age. Prolia turns all that on its head for the majority of people, to my understanding. It's such a popular drug amongst the medical profession because it prevents vertebral and hip fractures very successfully (before other types of fracture like atypical femoral fractures possibly occur). So, if your mom has started having fractures while on Prolia, then it's most likely caused by missing or delaying a shot - which she has. I came across someone in the US who'd started having fractures and couldn't work out why. When she went back through her insurance claims for Prolia, she realised that she'd missed a shot. So there was the answer in her case.
If your mom has since had her missed shot, that should hopefully stop further fractures, but I'm not a medical professional, and some of them might suggest Evenity, an anabolic, as a bone builder in place of Prolia.
Unfortunately I've come to realise that a significant number of GPs and endocrinologists know very little about Prolia and the osteoporosis drugs. That's why I mentioned trying to find a good (knowledgeable) endocrinologist. Before your mom was prescribed Prolia, she should have been made aware of the fact that she could never stop it (well, it is possible, but it's a bit of a tortuous path) and also had a trial of a bisphosphonate to see if she could tolerate them if she had to stop Prolia. There's no point in starting Prolia if you get bad side effects from a bisphosphonate, which a lot of people do, because then there's no way out. Most doctors and endocrinologists don't do that, instead just doling our Prolia without informing their patients of the side effects, consequences, etc. If your mom is very elderly, I would have hoped that her doctor would have got you involved, but it appears that you weren't told that she was starting Prolia.
If you think she should stop Prolia, this is a conversation you should have with your mom and her endocrinologist in the same room at the same time.
I didn't know I had OP until finally found 6 vertebral #s. I refused Prolia as side effects inc. eg # femur sounded horrendous! So they do know it can actually cause # s but in rare cases- with my luck it wasn't worth the risk. Problem is you'll never know if Prolia caused your mum's # s, it could have happened either way I guess, but nothing you can do now except deal with it. Good luck. X
Well, for a drug that is supposed to heal it does a lot of damage. I’ve refused them for over eight years. You expect that the drug is preventing the fractures not causing them. Unfortunately, you can’t just come off prolia after all that time. The result is often rebound fractures and in places other than the back like the leg. People not on any of the drugs would expect they’re taking a chance of getting fractures. But why would you take the drug then have fractures. You’d expect you’ve protected yourself. Sounds like it’s risky either way. Many never break a bone that can’t be explained by a bad fall. I’ve had one in my back shown up on X-ray but I wouldn’t have known otherwise.
Yes. I had two compression fractures, the discovery of which led to a Dexa scan and diagnosis of Osteoporosis and I have recently discovered I now have a third! I only take calcium and D3 (AdCal) for the osteoporosis. I was offered Alendronic Acid but refused it.
My very top endocrinologist said Prolia is the standard of care and first choice for everyone. I personally said no because of this group’s chat and mayclinic’s also. I am so small a person I thought Prolia is too big a commitment because it’s 6 months of medicine.
I tried 3 bisphosphonates and I liked actonel the best but then my dr wanted me on a stronger medicine and he and I chose Tymlos together daily injections. I don’t really like it but I am doing it .
Thank you for your post. I think it has helped my decision. I am allergic to Biophosphates and after agonising I chose HRT because I was so worried about the side effects of the other drugs. I have recently had a THR because of Avascular Necrosis caused by long term steroids. Now my Rheumatologist is really pushing Prolia. I know I need bone protection but it seems so risky to take a drug that can cause Avascular Necrosis of the jaw when I already had it in my hip. It’s a shame that decisions about these drugs cause so much stress.
That’s too bad, I hate hearing that someone had a fracture on their bone meds.
The thing I find maddening is that you can get fractures either on or off some of these drugs. In my case, I had already had one when the cancer spread years ago…so I was put on Xgeva for 2 1/2 years. I kept hearing things on forums where people said you shouldn’t be on this one more than 2 years, my doctor said that wasn’t true.
So I went to the Xgeva drug company’s website and it said there’s a higher risk of fracture the longer you’re on it!
I told this to my oncologist who said I just read it wrong and that not one of his 1000 patients had this happen. I had to make a decision because either way was a risk. So I took myself off of it last year and have been joining natural health groups and doing supplementation with Boron, K2, Diotemacious Earth, etc.
The way I see it, they say you have to be on it for life and if that’s going to pose big risks anyway (including leg fractures - what!?) then I’m better off taking the risk.
That’s for me personally…I know it’s not everyone’s path but it’s my body and if I can’t have a frank discussion with my drs without being blasted for making my own choice, then I don’t know what to say.
I wish your mom all the best in whatever she decides!
What a total cheek for your oncologist to say you had just read the report wrong! How patronising of him. Having chosen the same path as you, I wish you the very best of luck with your future.
I had two bad vertebral fractures before I was diagnosed and started treatment, so yes, with OP we get fractures without treatment. Sadly the treatment doesn't prevent all fractures and I have had two more since. And we haven't done anything to cause them; they just happen. My worst was when I was turning over in bed!
I'm in the UK and have five compression fractures, so after I read your post, I googled Prolia, and it seems that some of these medications (which I have never been offered) behave like spurned lovers! The longer you don't take them the more damage they do to you.
After my second compression fracture I was offered Alendronic Acid, which I took for nine months, along with Vitamin D and Calcium. Then when I read about what AA could do, I stopped taking it. Recently, my dentist has noticed that a group of my lower back teeth have shifted upwards, though there doesn't seem to be a problem, and I'm thinking that might be as a result of taking AA - and after only 9 months!
So, anyway, because of my age, 78, it is likely that my bones in general would have less strength. None of the medications provide much protection but I continue with the calcium. Most of my fractures have been the result of doing something silly, and after the last one, I decided to take more care and let someone else do the heavy lifting, pulling and pushing, and honestly, especially after reading about others with similar problems, I really believe that practising damage limitation is the best option. Take care of your mum.😊
I refused to go on any osteoporosis medications. In less than 2 years, I had a spontaneous vertebral fracture while putting clothing into a laundry basket. 6 months later, I suffered another vertebral fracture which was prompted by a fall, but happened none the less.
my doctor said yes they happen to everyone all the time but that we usually don’t know about them because they are small and they are normal to have and heal.
I have had fractures, not on drugs. Started taking fosamax (what was prescribed at this point,) when I confirmed fractures, didn't want doctors to yell at me, as I'd decided I'd probably better find out what's going on.
My father-in-law stopped Prolia, and his doctor let him, didn't start him on something else. In shockingly rapid fashion, he fractured multiple vertebrae, shrunk inches/became humped, and was in constajt debilitating pain until my husband, who kearned it from the internet, said "Yoy can't stop Prolia! Can't believe your doctor let you do that!" My father-in-law was about 85 at the time, driving, in good mental health, living on his own. Now he's in assisted living. Restarted the prolia and is in less pain. but one wonders if his doctor just...didn't care? Felt 85 was long enough? Hard to imagine he didn't know what would/could happen.
I can't say of course because I'm not a doctor but it does seem like how good a condition you're in when you have the fractures affects how you fare/how quickly you heal. I'm sorry for your mom, and you. It's hard to watch someone suffer, really hard to know what to do about osteoporosis.
for anyone wanting to supplement in addition to, or instead of certain bone drugs, please look into Boron (Borax) and Diatomaceous Earth - there are groups for both on FB which highlight thousands of personal experiences, many of which are nothing short of miraculous for bone building, bone strength and healing. (And other benefits).
You can ask qs there and see if they would be something you’d like to try.
I don’t know if it helps but my doctor implied “some people have low enough dexa scores that they will be on medicine forever” and he said to me “ regardless of which medicine you choose ( with these low scores for osteoporosis) you will be on medicine forever”
Last year, before I was diagnosed with osteoporosis, I had a vertebral fracture from trying to lift something heavy awkwardly. I went to an osteopath who thought I had strained ligaments/muscle in my lower back and it wasn’t until I had a DEXA scan six months ago prompted by having to take steroids for an auto immune condition that I found out that I had a compression vertebral fracture. So the answer to your question from myself would be “yes”.
the doctors make us believe without the drugs we would have many more fractures or worse fractures.
My mom who had no drugs and tripped in her apartment at age 88,
She had never had any osteoporosis drugs and she had severe osteoporosis and dowagers hump on her back. She had a very bad hip fracture and my doctor said “ maybe she would not have fractured if she had taken medicine. “
She healed very well from that fracture. So I felt the no medicine helped her heal well.
that being said she had a trrrible dowagers hump and a walker at 92.5
A lot of aged related bone issues have to do with activity level and not medicine is my opinion. I have a close friend who is 97 and stays active even just to walk up and down stairs or around her building . She refuses a walker because she believes she has to work harder on balance without a walker.
A lot of us here are on medicine to prevent fractures and we are told we would break if we do not do medicine.
My understanding is the medicine prevents
Fragility fractures but it creates harder bones so if we fall , the healing is slower.
However maybe the medicine helps at least make the fractures not as bad?
Also you know there is a 5 or 10 it 20% where the medicine doesn’t really help but doesn’t hinder I think
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Confused
Has anyone had positive results, low side effects with Foxamax? 
do I need medication 
