Osteoporosis

[MAE902]

Wondering about others experiences with Prolia. Have had osteoporosis for at least 4 years , no fractures and have been recommended to start . Very concerned about jaw bone issues and other side effects , especially additional bone loss with discontinuation

[Met00]

Have they explained why Prolia has been recommended? It's intended for those at very high risk of fracture, usually after a bisphosphonate treatment has been ineffective. You need to be sure you can tolerate bisphosphonates before starting Prolia, because if you ever have to stop it, you need to go straight onto another osteoporosis medication to reduce the risk of rebound fractures.

[MAE902 in reply to Met00]

Thank you for your response ! I’m not sure why my provider skipped right to this treatment. I have never been on bisphosphonste. It may be that I didn’t tolerate calcium supplements in the past . I’ve just tried a lower dose gummy recently and I’m 4 days into seeing how that works . I am so glad that I didn’t start the Prolia . Both my mother and her mother lived well into their nineties w osteoporosis and were very small boned , thin women like me and never had unusual fractures. I’m going to do some more reading . Thank you again

[FearFracture]

I recommend asking your doctor about starting with an oral bisphosphonates (alendronate) first--pill taken once weekly, and before taking any meds you should review this list of tests with your doctor betterbones.com/testing/wha... (if you scroll down you will see the list and there is a printable pdf format). Also, you need to see your dentist prior to taking osteoporosis meds--complete exam--and tell him/her you are considering osteo-meds. And don't assume your doctor is going to do these tests or recommend you see your dentist prior to writing a prescription for you, mine didn't!

I took alendronate for almost a 1.5 yrs before I happened learned about ONJ by chance. I went to a new dentist and had to fill out some paperwork and there was a question about osteoporosis, so I asked my dentist why and she mention ONJ. Yes, I am irritated with my endocrinologist for failing to mention this. No, I have not had any major dental issues.

I stopped alendronate because it was causing digestive issues and I reluctly had my 1st zoledronic acid infusion (also a bisphosphonate) in November 2021. My numbers are not good, lumbar t-score 2019 was -3.9 and in 2021 it was -3.7, which is not a statistically significant improvement.

I am now doing everything I can to try to naturally improve me BMD--eating 6+ prunes a day, cutting caffiene intake even further, and I joined a gym, etc. and I am considering purchasing a Marodyne LiV platform. melioguide.com/osteoporosis... In last few yrs, the Royal Osteoporosis Society has approved this device for treatment of osteoporosis.

Note, it's my understanding that the risk of ONJ is lower with oral bisphosphonates.

[MAE902 in reply to FearFracture]

Thank you. Will review resources. I think Dr skipped Actonel due to history of acid reflux. Having UGI this year so will postpone any osteoporosis tx until then at least . Just consulted a dietitian who made recommendations that included a few prunes per day so on board w that !I have to look at my bone density numbers again

[FearFracture in reply to MAE902]

Get very familiar with your DEXA scans. Dr. Brown on BetterBones.com does a great job of explaining them, and make sure that you rec'd your complete DEXA report for each year that you have had it done. After watching a video of Dr. Brown explain the reports given to patients, I'm pretty sure the practice that did my scan did not give me the entire report. Looks like I just have a summary. I have to go in town tomorrow, so I will be stopping by there office to get the complete reports for 2019 and 2020, if there is more to see.

Also find out what type of DEXA scanner was used. There are different types (think just 2 but there might be more). It's recommended that you have your DEXA scan done on the same device every time, but at the very least that you use the same type of scanner. Note, I have no intention of having my next scan done on the same machine because I'm not going back to that practice. I've heard there may be "newer" technology that gives more info so if that is available to me, that's what I plan on using.

It's great that you've started eating prunes. Info on the prune study can be found here melioguide.com/osteoporosis...

I've walked my entire life and have always had a relatively healthy diet but I went through a very early menopause and NONE of the doctors I've seen in the last 20 years bothered to say, "You really need to get a bone scan" which is super-unfortunate for me because my bone loss could easily have been caught when it was osteopenia and I wouldn't have such an uphill battle. Note, I'm 53, and was diagnosed with osteoporosis at 50.

I took the alendronate because my endocrinologist said take it. I been seeing him since 2017 because I have hypothyriodism. The minute I walked in his office in 2017 he should have scheduled the bone scan UGH! but he isn't the only doctor to fail me on this so....

I didn't think much of anything about taking the alendronate because he seemed to be helping me with my thyriod issue (I take 75 mcg of levothyroxine daily for that) and he honestly said to me, "Your bones are horrible." I'd told him that I prefer not taking drugs if there are natural solutions and he mentioned NOTHING not even the prunes--the prune study is from the early 2000s. His advice alendronate, lift light weights and walking, vitamin D and calcuim.

I've been walking my whole life. If walking were enough to stop osteoporosis, I wouldn't have it. I was so nervous about the zoledronic acid once I learned about the ONJ and after reading other ppls accounts of major pain after getting the infusion that I was hyper focused on making sure my teeth were ok before getting it. By sheer coincidence, I'd had a full dental exam with xrays in April 2021. When I went back for my cleaning in October 2021, I told the dentist that if there was anything that even remotely looked like it might need to be filled, to fill it. So she pointed out a few teeth--couple on both sides of my mouth. Note, they didn't hurt. I just wanted to avoid anything from developing into something worse to potentially avoid problems after getting the zoledronic acid.

The dentist filled 2 teeth on the upper left side of my mouth and I had problems with this fillings. Remember this is all before I got the zoledronic acid but after I had been on alendronate for 1.5 yrs. At the time that I was getting my teeth worked on I was on a "bisphosphonate holiday". I had stopped the alendronate in July 2021 and had cancelled my infusion and rescheduled if for after my dental work.

The problem with the filling (it seemed to be with just one) was that I experiencing pain--nothing to horrific but more pain than before getting the filling. Note, these were my first fillings since I was around 12 years old so I really didn't know what to expect. Because I was having issues, I cancelled the appt I had scheduled to get the fillings on the right side of my mouth (note it was supposed to be 2 days after the 1st 2 fillings and I wanted to be able to eat LOL).

When the discomfort didn't go away after a few days, I did a little research and started to think that maybe I was allergic to the resin used in the filling. I went back to the dentist and she took an xray of the teeth that had been filled and said everything looked absolutely fine. I specifically asked her if I needed to get the teeth on the right side of my mouth fixed before my zoledronic acid infusion and she said no, that I could go ahead with my infusion.

So I got the infusion in November 2021 and really had no issues. I did drink plenty of water before and after getting it and I do stay well hydrated. However, I'm pretty sure the infusion has caused me to have dry mouth and that kind of bothers me because dry mouth can lead to dental issues.

Although my dentist told me to go a head with the infusion before getting the other teeth filled, I have since read that is best to get even minor dental work done prior to getting the infusion. Truthfully, I'm not too worried because I basically asked to get the fillings meaning my doctor didn't walk in and say, "Your teeth are rotten, and they need to be filled immediately" but still, if anything does go wrong, I'm going to be extremely mad, but again I am not too worried.

Here's what the American Bone Health Organization says about ONJ

americanbonehealth.org/medi...

americanbonehealth.org/bone...

americanbonehealth.org/bone...

and americanbonehealth.org/medi... it states "Consider taking antibiotics before dental surgery. More than 90% of the patients with BRONJ get a bacterial infection called Actinomycosis [6,12] in their jaw. A case-control study on myeloma patients receiving high doses of BP treatment for more than 20 months [3] found that a course of antibiotics markedly reduced the risk of BRONJ. Talk with your doctor about taking an antibiotic, such as penicillin, before any major dental procedures, if you are on Zometa or XGEVA for cancer."

I'm pretty sure the dose of bisphophonates in cancer patients is higher than for treating osteoporosis. Regardless, the antibiotic might be a good idea for all, if needed.

I've joined a gym so I can slowly work up to heavier weights--light weights might slow bone loss but they aren't going to reverse bone loss--and I've broken my morning walk up in to 2, 20 minute walks to make sure I keep my pace up, and I've added in push-ups (most against a wall, a good number on my knees, and I am slowly increasing the number of "real" push ups), back extension exercises, heel drops, and I stomp each foot 4 times twice a day (as if I am crushing a can). All of these things are supposed to help but make sure you talk with your doctor before adding in exercises and work slowly up. Additionally, I used to wear sneakers in the house, now I wear slip-resistent socks and I do balance exercises, but I really have no balance issues. I can easily stand on 1 foot for over a minute. I'm also considering getting a weighted vest but I haven't done it yet.

[MAE902 in reply to FearFracture]

This is exactly the type of information that I need! Like you’ve I’ve been on synthroid for a long time . I had a good doctor at the time ( rare to find now ) who warned me about the risk to my bones along with my slender stature . Well I listened to her but really didn’t change my lifestyle much as I was an active 34 year old who ate a very well balance diet . Fast forward 30 years . Should have been carrying weights w my walks and a few other things I guess

I will look up my scores as for the life of me I can’t remember if they were done at the same scanner .

I will also watch the links that you provided

Thank you

[Arcadia10 in reply to MAE902]

Met00 provides some very good advice in regards to ensuring that you can take a bisphosphonate successfully in case you need to stop Prolia. A lot of people can't tolerate a bisphosphonate because of the side effects, so it's essential to know that at the outset.

I was scared into starting Prolia after breaking my left tibial plateau in 2017. I've since learned that it was a non-fragility fracture and that I should never have been put onto Prolia. I had to stop Prolia after 2 years as I had nasty side effects and a new GP said I was allergic to it. I had to start on a weekly bisphosphonate (Actonel) in Mar 2020 to get off Prolia safely and struggled to take it for the first couple of months, switching to the daily version for 2 months to try to ease onto it. Fortunately, that worked, but I still had a few fractures (sacrum and pelvis) in Sept and Oct 2021. So getting off Prolia safely is not guaranteed and, to my mind, it should not be prescribed as a first line drug. Once I'm off the latest bisphosphonate (Fosamax), I never intend to take these osteoporosis drugs again. To my mind, they do more harm than good. As FearFracture says, there can be issues with having dental work done while on these drugs - and a lot of people would need to have something invasive done to their teeth over the 5-10 year period of being on these drugs. It's not something one can really anticipate years in advance. The risk of ONJ is very real and, I think, underestimated and under-reported. My dentist is across this issue and says the incidence is 1:1000. One of my GP's patients is being treated for ONJ at present as an ill-informed dentist removed a tooth, and the lady in question (in her 80s) was on Fosamax.

If you want to try to improve your bone density the natural way, have a look at the COMB (COmbination of Micronutrients for Bone) study hindawi.com/journals/jeph/2... It doesn't mention boron which I understand is very good for one's bones. Prunes contain boron, but I take a supplement of 3mg daily which is simpler (unless you like prunes!). I also take vitamin K2, magnesium, eat a lot of fish and have started eating almonds, and will be taking strontium citrate once I'm beyond the Prolia rebound period and off the Fosamax. So I'm following the COMB study recommendations to a large extent (apart from the Fosamax 🙁, boron and almonds).

It would be good if you could post your DEXA results for more comment.

[TannS in reply to Arcadia10]

How are you doing, Arcadia? I was so sorry to read of your sacrum+pelvis fractures. I'm newly diagnosed and very uncomfortable with the idea of taking these drugs, so I am particularly noting that even given these fractures you as well want to stay away from them. Would love to hear how your journey is going now. All the best to you in your healing!

[Arcadia10 in reply to TannS]

Thanks for your interest and good wishes, TannS. I do feel for you being newly diagnosed as it is a very scary place to be. I was in shock when my doctor's receptionist told me - over the phone - that I had osteoporosis. It felt like a death sentence at the time. That was 11 years ago and I've since come to realise that it's not the end of the world. In fact, if you do your research and educate yourself as to your own personal situation and results, you'll probably end up knowing more than your doctor does - and can therefore make informed decisions from a position of knowledge.

I realise with hindsight after starting down the path of osteoporosis drugs (Prolia initially) that my doctor and specialist knew very little, except how to prescribe (and not even what to prescribe and in which order). In my case, as my osteoporosis (hips only) had been roughly stable for 8 years, I really didn't need to take any medication. The doctor, however, looked at a single result after a non-fragility fracture and sent me off to a specialist who basically did the same - and prescribed Prolia. That turned my life upside down for over 4 years - and actually caused the fractures I had. It sounds like you will avoid over-reacting and rushing into the meds as newly-diagnosed people often do out of fear - which I did - so that's good. You've come to a great place for information as there are so many really helpful and well informed people on this site.

Since my post on this thread a year ago, I've stopped the Actonel (in Sept 2022) after switching back from Fosamax after 4.5 months on that. I was rather anxious that I might have more fractures, i.e. that the Prolia rebound period wasn't completely over, but the endocrinologist seemed to think that I would be safe as I had been on the relay bisphosphonates for 2.5 years. Now that it's 6 months on from stopping the meds and nothing bad has happened, I feel much more confident. I did find out in July 2022 by way of a routine chest x-ray that I had two broken ribs which must also have been Prolia rebound fractures as I hadn't fallen, but I wasn't experiencing any pain, fortunately. Apparently ribs heal on their own, so there wasn't anything I could do anyway.

When I stopped the oral bisphosphonates in Sept 2022, the endocrinologist suggested that I start strontium citrate immediately, which I did. I found it rather constipating, so have stopped and started it a few times and reduced the dosage to 250mg, but intend to persevere in the long term. I haven't had another DEXA scan yet, so can't report any results. I've continued taking the other supplements from the COMB study I mentioned above: boron, magnesium, vitamin K2 and have added zinc and melatonin. I don't take vitamin D3 as I live in a very sunny part of the world and my level of vitamin D in blood tests is always spectacular!

Despite the fractures and having to build up my distance again slowly over a period of 6 months, I'm now walking 12 kms three times per week, which of course is wonderful weight-bearing exercise. I do have a slight twinge in my right sacrum/pelvis area which I think is one of the fractures complaining, but hopefully that will dissipate with time. So all good so far. Fingers crossed!

My thoughts on the meds are that there probably is a place for them in severe cases of osteoporosis and under the guidance of an informed physician, but often the cure can be worse than the disease. Apart from the rebound fractures, I had relentless side effects from Prolia, less so from the oral bisphosphonates, but the ones that concern me the most are the atypical femoral fractures and osteonecrosis of the jaw. One can still be susceptible to these conditions years down the track after stopping the bisphosphonates. I have just had a third crown done, the last two as a precautionary measure as two lower rear molars had long fissures in them which my dentist thought would fracture one day given enough pressure, necessitating extractions if they fractured below the gum line. In the case of the first crown, the side of a rear lower molar broke off - luckily not below the gum line - but acted as a warning. This was an expensive exercise but very necessary as the bisphosphonates stay in your bones for 10 years. My dentist was not happy when I started on the osteoporosis meds, telling me that any invasive work would have to be done by an oral surgeon in hospital, and I think an extraction was included in that category. As I have excellent teeth and seldom have any work done besides a clean and polish, I feel quite resentful that starting these meds has hurt not only my bones, but also my hip pocket!

I'd be interested in hearing a bit of what your diagnosis said, TannS, if you're happy to share. Were you given your DEXA results and have you had any other tests, such as parathyroid, bone turnover markers, vitamin D, etc? A lot of doctors seem to launch into the meds without doing any prior testing for conditions which could be contributing to osteoporosis which is just plain negligence IMO. If you don't have a history of declining bone density over a period of time, going onto meds is probably premature.

[Greekolives]

I was on Prolia for two years. I have severe osteoporosis. Prolia helped my hips, but not my spine. So now, I do daily Forteo injections. It will be one year on February 2nd, so I have one more year on Forteo. Then, my doctor will recommend a treatment to maintain the bone I gained on Forteo. I tolerated Prolia very well, so maybe my doctor will have me on that, not sure. All the more natural remedies I tried failed me. We had to do something that works.

[MAE902 in reply to Greekolives]

Thank you for the information. It’s good to hear both sides of the story.

[HeronNS in reply to MAE902]

Arcadia10 gives good advice, and very like what I have done, without being on any bone medications. Have a look at my story for some ideas on how to improve your bone density. Also, have all your possible "secondary causes of osteoporosis" been checked?

osteoporosis.ca/medical-con...

healthunlocked.com/pmrgcauk...

[Mark_ABH]

Hi MAE902, regarding your concerns about jaw issues, here is some guidance from the American Medical Association: americanbonehealth.org/oste...