My first time here, typing that is. I’ve read a lot. Thank you for your stories.
Now for mine. (I’m 67 years old and reasonably fit) I sustained a compression fracture of L2 back in August of 21 while stupidly helping to carry a very heavy item up a flight of steps while walking backwards and leaning a long way forward. Tests showed that my BMD in my spine was down a little, but not osteoporosis.
My doctor put me on Prolia and again stupidly, without any research, took the jab. (Didn’t Covid teach me anything?!) I’m due for my 4th shot in 2 months. I’m not taking it and have a prescription for Fosamax once a week tablets instead.
My question is, should I start taking the tablets on the day that the next Prolia injection is due, or earlier to allow for some overlap? From what I’ve read I expect I’ll take them for a year or so and then get my BMD measured again. Thank you. John
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Dekk
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I would say follow your doctors directions for getting off Prolia. Wishing you good luck😊 I’ve been on Prolia 4 yrs now and haven’t had any problems. My scores have improved some and are not getting any worse.
Hi John, Welcome! I’m quite new and in a similar situation. I’ve been on PROLIA (also stupidly) since 11/19. I’m also hoping/planning to get off this drug when I have my first Endocrinologist appointment September, 2023
From what I’ve read here: (I’m currently taking a shot every 6 months) …..that 3 mos after my final PROLIA, I’ll switch to a new/somewhat safer med (TBD).
Just curious, what issues have you encountered with Covid inoculations?
Hi Dorie. Thanks for replying. I thought I read somewhere that I should start taking a bisphosponate two months before my next Prolia injection would have been due. I haven’t got an answer as yet. I neglected to ask my doctor when I got the script for Alendronate.
As for the Covid vaccines, I did my research first and didn’t take the jab. The FLCCC protocol got me through my bout of Covid. I didn’t research Prolia before taking it. For many it has proven to be a wonder drug which is great. And expect for a sore jaw, I’ve had no other (I think) adverse side effects. I just believe now that diet and exercise would have got me through.
Keen to hear how your “safer med” goes. Very well I hope. John
Thx for sharing, John. Good to know! I’ve had the sore jaw several times. It freaked me out a-bit as to what was happening & where it might be headed, I guess if it merely comes & goes, I could tolerate it.
until osteoporosis in 2019 at 67, I was quite healthy, never noticing such aches or pains! I regret my PROLIA decision as I now have a drug-induced autoimmune deficiency; the resulting exhaustion makes my life difficult. (I was recently told to watch my blood results/Album ratio. Though I did ask my doctors n 2019 about it, I was told it wasn’t out of range enough to worry about: not true….if that helps.)
I’m glad to be here! I’m learning from everyone. I’ll keep you in the loop
I spoke ke to my new Endo last week. She said my insurance would most likely not pay for the med 2 months before regularly scheduled PROLIA injection. I pursued the topic just the same, she continued to shut me down. I’m looking for a new Endo who will give me more than :10 & more thorough dialogue 🙄
The definitive guide for getting off Prolia was written in 2019 by a Swiss professor, Dr Olivier Lamy: researchgate.net/publicatio... He recommends oral alendronate (see Table 3) started 5-6 months after your last Prolia injection or zoledronate infusion (Table 4). I have come across another highly knowledgeable endocrinologist whose pseudonym is endodoc on another site, Inspire.com, who recommends starting alendronate 3 months after your last Prolia injection, so a 3-month overlap: inspire.com/groups/bone-hea... The most critical thing is not to go beyond your missed Prolia injection date without being on a relay drug.
As you will see in Prof Lamy's protocol, you must have your CTx bone resorption marker tested every 2-3 months and take action, i.e. switch to a more potent medication if it is increasing too rapidly which means you are in increasing danger of a rebound fracture. I was in touch with Prof Lamy late in my own journey to get off Prolia and he told me that it is vital to keep your CTx below 400. Unfortunately for me, I was put onto a less efficacious drug (risedronate) and only came across his paper a year into the process. By this stage, my CTx had spiked and I had a few fractures, fortunately not vertebral, and I've recovered well.
So there's a lot of testing to be done and you must stay on the relay bisphosphonate for at least 2 years and have another DEXA done each year while on the relay bisphosphonate as Prof Lamy recommends. Most people's BMD returns to baseline (or worse) after two years.
I'm also in Australia and found the lack of knowledge around getting off (and putting people onto) Prolia frightening. Most medical professionals I consulted had very little idea of what to do. My own GP admitted as much and left me to do my own research and wrote out scripts when I asked her to. So you have to be really proactive. None of them had ever heard of Prof Lamy's protocol and didn't even look at it when I gave it to them.
Yes, very helpful. The name (Lamy) rang a bell. I downloaded the paper a while back. (Now I know where I read about an overlap). And thanks for the other information too.
"As denosumab discontinuation is characterised by many uncertainties, denosumab is a second-line treatment for osteoporosis. Studies are urgently needed to define the management of denosumab discontinuation."
This comes from the introduction to Dr Lamy's protocol. He, himself, freely admits to great uncertainty as to the safety of these drugs. I have heard so many horror stories about the side effects, I consider them to be out-and-out poisons , which some people are simply lucky enough to avoid.
I prefer to follow the supplement route, using the information provided by AlgaeCal to guide me. Others have correctly noted that mainstream doctors are ignorant about these supplements so you're really on your own here. But they do work and they are safe.
Hi Dekk, I came off Prolia in December of 2019 which was when I was due for my 9th jab. I didn't relay straight on to another drug until the following May so lost most of the 'gains' that were achieved & consider myself fortunate to have not ended up in a wheelchair from SMVFs.
From what I've learnt, your doctor should monitor your crosslaps blood reading. The 'normal' range for this test according to SA Pathology is 0-399 (although different labs use different reference points) & in February of 2020 (I was due for Prolia in December 2019) mine was 1699.
I took bisphosphonates (either Actonel (Risedronate) or Fosamax (Alendronate)) weekly tablet until my crosslaps came down to 361 in November 2021. Unfortunately, as soon as I stopped taking it my reading started to go up again, 680 in March of 2022, 729 in June & then it maxed at 792 in February 2023. My last reading in June 2023 it had come down to 582 so am hoping it continues downward & will have to wait & see how it translates at my next Bone Density Scan.
I stopped the relay bisphosphonate (mostly Actonel with a few months on Fosamax) a year ago in Sept 2022 after 2.5 years. I had my first CTx since then done in Aug 2023, and found it had gone from 410 to 990 in 12 months. I see your own CTx went up steadily for 15 months after stopping the relay bisphosphonate, and then appears to have reversed of its own accord by the 19-month mark. Do you think (or have you been told by a doctor) that this spike and then reversal is usual after stopping the bisphosphonate? Any idea of the time frame?
I had another CTx done last week and am reluctantly considering going back onto one of the bisphosphonates if my CTx is still elevated as I'm concerned about the risk of fractures. I really don't want to take any OP meds again and am wary of doing so as a kneejerk reaction because I'm worried, so would appreciate any input you (or anyone else) can provide. Judging by your experience, if I waited for another 6-7 months, my CTx might start coming down of its own accord. It's difficult to know what to do.
Just read you’ve taken it for 18 months but I think you’re still under the two years. Why on earth would any doctor give a patient this drug for a condition they don’t have. Double check but I think you’re just in time to be safe.
I lost all my implants and upper teeth after only 2 shots of prolia . As well as developing necrosis of the jaw which could have killed me . I heard of a woman who died . Do your research …..
I’m due for my 4th Prolia shot in about 4 weeks. I’m not taking it. Instead, and solely for fear of the rebound effect, I’ll take Fosamax for as long as necessary; however long that might be. I took my first tablet this morning. When I get my next script in a month, I’ll arrange for the necessary scans.
I’m still looking for the right doctor to guide me through this “therapy”.
You must stay on Fosamax for at least two years, according to Prof Lamy's protocol, and be guided by regular CTx blood tests. My CTx jumped when I stopped the relay bisphosphonate after 2 years, so I went back on it for a further 6 months - a total of 2.5 years.
After a year off the bisphosphonate, my CTx spiked again in Sept 2023 and I went back on to Actonel for 6 weeks to suppress my bone turnover yet again. I'm guessing that perhaps this is the nature of the beast - CTx takes a while to settle down to a "normal" safe level after the relay bisphosphonate is stopped, as seemed to happen with JandoraKyani who posted above. I've since decided to get off this merry-go-round and stop CTx testing and hope for the best as I don't want to take any osteoporosis medication. My DEXA due next month will be interesting after 4 years off Prolia...
I’m curious, why are you taking osteoporosis drugs when you do not have osteoporosis. These drugs have so many side effects and I don’t know if the benefits vs the risks are worth taking the drugs when you don’t have the disease.
Hopefully, your physician has reviewed the treatment well with you.
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