I would be interested in hearing from anyone (or if you know someone) who has been on Prolia (denosumab) since they were in their 50s or early 60s, and stayed on it long term. I am due to start this treatment in a few days and I am 59. I am concerned of the long term effects. I have read about ONJ and femur fracture but if anyone has anything else to add, positive or otherwise, I would like to hear from you.
I have severe osteoporosis with fractures and pain. Recently finished two years of teriparatide with nominal improvement to bone density, but still severe osteoporosis.
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MollyStark
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like you I had Terraparatide. I’m now on Denosumab which they’ve told me will be for life. I’ve got Osteoporosis quite badly with seven spinal fractures and my foot fractured.
I'm sorry to hear about your fractures. I've had three in my spine but am certain I have recently had another one. Can I ask how old you are? I am concerned about taking it due to my 'young' age.
No direct experience but my aunt took if for 2 years (4 injections) and her t-scores did improve--she now has moved in the osteopenia range. Note, she doesn't have any fragility fractures and she hasn't had any height loss. She recently turned 80 and her last injection was in Sept. 2021. She had taken alendronate (70 mg once weekly) for 5 years before going on Prolia. She stopped Prolia because of the improvements in her t-scores and she wants the option to go back on it if she needs to later on (so basically if she lives another 20 years, we determined it might be easier to go on Prolia at 90 than to have to take an oral medication). 6 months after her last Prolia injection, which was in Sept. 2021, she started Alendronate (in March 2022) and she will continue to take the Alendronate that until March 2024. She is planning to have another DEXA in March 2023 to make sure the alendronate is helping her keep the gains from the Prolia.
Thank you for your reply, apologies for the delay in replying. It sounds as though your aunt is doing well, and has done well to avoid having fractures. My option will be alendronic acid as a follow on treatment after 5 years but I am hoping there may be other options by then.
See that you are in the UK so I can’t speak for what your hlthcare system will / won’t cover. In the US, if you are being treated for osteoporosis, your insurance will cover annual DEXA scans (for those who don’t have osteoporosis insurance only covers DEXAs for ppl age 50+ every other year). If I’m reading your reply correctly, sounds like you are planning on taking Prolia for 5 years followed by 2 years on alendronate. I highly recommend you have annual DEXAs and ask your Dr. about doing blood turnover marker test PRIOR TO starting the Proliaand again a few months after you are on it, to make sure it is doing what it is supposed to do. There are several links in my bio, one is to a pdf on blood turnover markers and other to tests to check for secondary causes of osteoporosis.
My aunt’s bone density increased significantly after only 2 years on Prolia and you might not need to stay on the Prolia for 5 yrs. Testing you bone turnover markers before starting and after a few months will tell you if the drug is working or wasting your time. Also if the UK hlthcare system won’t cover annual DEXA scans, it might be worth paying out of pocket for—I can get a DEXA in my city for $85.
Additionally, generally the goal of all osteo-meds is to either increase bone formation or decrease bone resorption. Around the beginning of 2022, I started researching how the body absorbs calcium—I was trying to find out if there is a way to sort of force my body or trick my body into absorbing more calcium from my diet. After reading up on how the body absorbs calcium, I changed switched my calcium supplements—I had been taking a 600 mg supplement but the most calcium the body can absorb at one time is around 500 mg—so I bought a 200 mg calcium supplement and I make sure to supply smaller doses of calcium throughout the day to make sure my body always has calcium available. Between supplements and diet, I get between 1200 - 1500 mg of calcium daily. Additionally, every night just before climbing into bed, I take a calcium supplement—I decided to do this because everything I’d read talked about how your body repairs bones at night. I would drink a glass of milk before bed if so could, but that would cause me to wait up several times to go to the bathroom so instead I take a calcium supplement.
A few days ago, while researching bone turnover marker blood tests I stumbled upon an article that confirms my decision to take a calcium supplement before bed.
The article states, “Dietary calcium appears to inhibit bone resorption. Calcium supplements taken in the evening significantly reduce resorption markers, in the fasting state, the next morning.”
I think the current idea of Prolia (denosumab) for life is relatively new (last 3 years?)
I'm also on a similar path as you and Mavary. I started on Prolia (denosumab) as soon as I had ended my menopause aged 54, having been in the Osteoporosis range from late 40s. Like FearFracture’s aunt I did extremely well on the medication Prolia scan on the same machine after 5 years showing scores in the mid osteopenia range. Unfortunately for me the Prolia was stopped “I didn’t need medication anymore” so in 2017 ended up with 8 spinal rebound fractures. I did 2 years on teriparatide with like you nominal improvement to bone density, however Consultant said not to be too disappointed the teriparatide doesn’t just stop working (unlike Prolia).
Prolia was considered to be the best treatment available for me given other concerns but I was scarred to go back on it especial during the earlier stage of Covid, what would happen if for any reason I couldn’t travel to the hospital/ the hospital couldn’t see me etc. So I was to do a holding 2 years of Zoledronic acid infusions (starting June 2020) unfortunately I had problems with this so ended up agreeing to a life course of Prolia (aged 64), with regular scans to check progress.
Having said that I cannot imagine or intend to be on Prolia for life! I keep a close eye on ROS news for new medication, ideas etc. as like you one cannot help but worry about side effects staying on such strong medication for so long. Would the reassurance of regular scans help you, I don’t think the hospital I attend normally offer every two years this was to help me! I know scans are just a snap shot BUT they are an excellent reassurance.
Thank you for your reply, apologies for the late reply. I am so sorry to hear about your rebound fractures. We have to be so careful and educate ourselves because very often the medical staff just don't know as much as we do. I am supposed to go on to alendronic acid after 5 years of prolia. Fortunately the consultant and the specialist nurse at the FLS and Osteoporosis Department understand the importance of this - although the other senior nurse (dark blue/red stripe uniform?) told me I could have a drug holiday after the five years on Prolia...I very sharply put her right on that and got a 'oh yes, that's right' response...🙄
I would prefer to have regular DEXA's although I have been told there is no need for one until the five years is up. But I would like to know how it's progressing so will probably push for one in a year's time.
Thank you again and I hope you are staying as healthy as possible on the treatments.
couple I’d really important points, has your Dr discussed an exit plan and planned a suitable relay drug for when you stop Prolia?
Research for Prolia doesn’t go beyond around 12 years so no one can say it’s safe for life. People will have to stop it for very many reasons, delay, missed dose, availability, dental issues, costs in some countries, other illnesses, side effects and of course choice.
When anyone stops denosumab (Prolia) everyone will go through rebound phenomenon irrespective of number of doses which causes very rapid loss of the old stored up bone, which had improved density, returning ddnsity to pre start of drug or even less. This rebound carries the risk of spontaneous multiple vertebral fractures occurring during the appropriate couple of years of rebound.
To try and counteract this phenomenon another (relay drug) antiresorptive drug, a bisphosphonate, must be started to try and reduce the rebound affect and it’s risks.
If you stop and Dr hasn’t ensured you can take a relay drug then you may have no drug to protect you sadly as research and manufacturers state it can only be antiresorptive drug that will do this.
This major side effect was only discovered 6 years after the drug was licensed and sadly still so many Drs are not fully aware of this, including mine. I’m now stuck in Prolia trap where I’m going through it with no available drug.
Happy to add research on this if required, sadly there are many paper out there.
Hi, thank you for your reply and apologies for the late reply. My consultant has discussed the exit plan, which would be the alendronic acid infusion, as long as I can tolerate it. It is shocking that many doctors aren't aware of the need for a follow on drug after all this time. We really do have to do our research and keep up to date with OP drugs and treatment.
I hope you are staying as healthy as you can on the treatment.
I have been on prolia injections since I was sixty, having two a year, I am now 68 years, and my bone density has improved slightly, yes you need to have a very good dental hygiene and see a hygienist and dentist very regular. The only drug I cannot tolerate is vitamin D with calcium, so I purchase my own plain vitamin D. Yes I have had several fractures, but I am still mobile.
Hi there, thank you very much for your reply, it is good to hear from someone who was at my age when starting the drug. I was very concerned about ONJ so I have had several appointments with my dentist having x-rays and checks. Fortunately the dentist is aware of the risks with prolia and I will now be having a check up every 6 months and seeing the hygienist every 6 months, so I am at the dentist every 3 months, which is reassuring.
I find most calcium tablets make me nauseous so I have a fruity gel like chew by Alive. I take it with my lunch and haven't had any nausea from it.
I am still mobile although I have severe pain in my middle and upper back and using my arms causes the pain to increase. I really hope I don't have any further fractures, I have gone from being quite tall to 5 feet 4 and half inches!
I look forward to chatting with you again and hearing how you're getting on with the treatment.
Yes have been on prolia for a few years . I have had no problems with prolia but this last few months my hair has started to fall out but am putting up with it as cant take AA
Thank you for your reply. I am really sorry to hear this. I can empathise as I have hair loss and am concerned it may get worse with being on Prolia. Can I ask how long you have been on it and what age you started having it?
Hi i think i've been on it 3or 4 years . The hair loss is not massive just annoying at the moment but apart from that i have no symptoms at all so happy to stay on it
I was diagnosed at 58, at first i was on AA with awful side effects so was then put on Prolia the only side effects i have is slight hair loss the big problem is dental treatment
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Any young people with shitty bones on this?
Terror
K2 supplement MK-4 or MK-7
Osteoporosis and Epilepsy Medications
