I'm new here.
I am an 80-year old man who has just been diagnosed with osteoporosis. The endocrinologist suggested 2 drugs that could help: Proliac and Reclast.
Reading about the possible effects of both got me very scared. The doctor suggested that I can take either one - that the side effects were roughly the same.
Does anyone have suggestions?
Bob
I would love some suggestions too Bob. I have not started any treatment due to concerns of side affects although a friend has mentioned she knows of someone who takes Prolia and has been fine. Good luck. 🙂
I’m not an expert but from what I’ve seen on here it’s not the taking of Prolia that is the problem - it’s when you want or need to stop - you must take a bisphosphonate or something else straight away to prevent rebound fractures.
See my reply to Bob, and stay in touch! Eat good healthy foods in reasonable quantities. Take good supplements, and live right! I'll be back in touch after I learn the new once-per-month injection's name and details. I'm skeptical, but my friend is an RN, and has a much worse T-score than I, and she's 58. I'm 76.
Thank you! I am just taking vitamin D and vitamin K2 which I believe is good for bones. I just take diet that contains Calcium...yogurt, cheese, milk etc. and look after myself. I do not like the sound of side effects that I have heard of the six monthly injections. How come years ago there was no talk of people needing these injections? My Grandmother lived until in her 90’s without medication.
Hi Bob, thank you for participating in our forum. This is a good group for sharing and receiving information.
Here is a quick rundown of the various osteoporosis medicines that are approved in the United States. Reclast is under "Bisphosphonates" and Prolia is under "Denosumab": americanbonehealth.org/fda-...
As another user mentions, the important thing to remember about Prolia is you need to stay on schedule with it. You get an injection twice a year; being even a month or two late can cause a loss of bone density and increase your risk of fractures. You shouldn't stop taking it without starting another medicine (usually Reclast or another bisphosphonate).
Did you get a DXA bone mineral density test to diagnose osteoporosis? DXA is an important screening tool. To learn more about your overall risk of breaking a bone, take a few minutes to complete the American Bone Health Fracture Risk Calculator™. americanbonehealth.org/calc...
You answer a short questionnaire, and it gives you an idea of your risk of breaking a bone in the next 10 years. If you are at moderate or high risk of fracture based on the calculator, you might want to consider starting one of these medicines as directed.
Good luck!
I used that risk calculator and saw that my risk of hip fracture in the next 10 years is 10% and the risk of ANY fracture is 16%. If this is authoritative, it makes the case for not taking any meds.
Hi Bob, I'm sorry but I unfortunately I did not have a good outcome with Prolia. My side effects included very painful backache...sore legs and arms and pain in my jaw.. Also my teeth hurt. I have a cousin who is on her 4th shot of Prolia and is fine. This is just my experience and I will not be getting a second shot. I may have to go another drug (rebound drug) because you just can't stop Prolia without a risk of spontenous spine fractures. You must take a bisphosphonate until your bone markers go down. If I can suggest to read up on all you can before you make a decision. Its a very long journey. Good luck to you and feel better.
Have the side effects remained and did they happen immediately after the prolia injection? My dr wants me to start this as well but I am undecided. Thank you for any info!
I received my shot on a Thursday and my back pain started on Saturday. Last week was my 3 month on Prolia. The side effects have subsided a bit but still not feeling myself. Hoping as time goes on they will lessen more. Prolia should be out of my system by February 4th.
I am a 69 year old male on Prolia for 5 years now without any noticeable side effects BUT: my bone doctor wants to stop medication for one year without a bridge to another medication as mentioned in other replies. She calls it a drug Holliday and wants to monitor closely and be available for the year to respond if needed. I questioned WHY? Her response was it’s recommended to stop for one year to prevent possible non event Femur fractures. When questioned what percent this happens; she had no answer. I then questioned about rebound fractures from stopping Prolia. She stated she had not seen that in her practice. So it’s true most issues are when you get off Prolia. I successfully took my first infusion of Reclast in place of Prolia last week and so far no side affects! I have now begun the two year bridge to get off Prolia without chance of rebound fractures. Thank you all on this site for providing the information and encouragement I needed to safely stop Prolia.
I definitely think you need to tell her about stopping Prolia and rebound fractures and just refuse to stop without dong what Mark has said and starting another medicine. I don’t think I’m wrong in saying that problem is well known about and you definitely don’t want to find out the hard way.
Thank you very much for the concern. I have expressed my concern to her already. I am collecting information to provide to her even before I see her in a couple more months. Information is from links; some provided by this group and of course google searches. My hope is she would be more informed By then. From what I have found I conclude it’s less risky to stop if you haven’t had a vertebrae break already And Dexi Scan numbers aren’t that bad starting out on Prolia and even now after 5 years. This is the situation I am in now. I think I will get off this drug permanently. Hope this post helps people to really think hard before taking meds like this.
I have refused Prolia for at least 10 years now......I did research. My mom got one injection without my knowledge. She had a horror story reaction, and I had to rush to her. Hip pain was "the worst pain I ever experienced", she said, at age 95. Doctors put her on several terrible meds and never admitted it was the prolia. It had been a month since Prolia injection. I found out only when in the doc's office WITH HER about the hip. She just incidentally commented, "I don't think I like that shot I got." I said, " what shot? "It was MY RESEARCH that finally convinced her the hip pain, unable to walk! was from Prolia. She never took 2nd shot and is fine at 97 now.
It's right there on the Prolia site for health care providers. No need to "do your research" on Google ... proliahcp.com/
Multiple Vertebral Fractures (MVF) Following Discontinuation of Prolia® Treatment: Following discontinuation of Prolia® treatment, fracture risk increases, including the risk of multiple vertebral fractures. New vertebral fractures occurred as early as 7 months (on average 19 months) after the last dose of Prolia®. Prior vertebral fracture was a predictor of multiple vertebral fractures after Prolia® discontinuation. Evaluate an individual’s benefit/risk before initiating treatment with Prolia®. If Prolia® treatment is discontinued, patients should be transitioned to an alternative antiresorptive therapy.
Thank you for pointing that out. That says it all in plain English. After reviewing Prolia information I’m stopping any further treatment with it and I am going to demand a follow on treatment to safely get off all bone related meds. Over time.
It is called rebound osteoporosis for a reason. Because the bone remodelling cells have been prevented from working, as soon as the medication wears off they rebound and work overtime to catch up, hence the danger.
Be very careful in your selection of an efficacious relay drug when stopping Prolia. I had a rebound fracture (of the left sacral ala) two months ago after 18 months on risedronate (Actonel). A supposedly-knowledgeable GP chose that particular medication because it's enteric coated, so doesn't cause digestive issues. The medication recommended as a relay drug is alendronate (Fosamax). I have it on very good authority (from Prof. Lamy who wrote Stopping Denosumab that risedronate is not as efficacious as alendronate in preventing rebound fractures.
I had 4 shots of Prolia and no prior vertebral fractures. The sacral ala I fractured is considered part of the vertebral column, at the lower end above the coccyx. My BMD when starting on Prolia was -2.3 spine, -3.4 femoral neck, and -3.1 total hip.
Do to acid reflux I have I am thinking of avoiding orally taken drug for a bridge off Prolia. Maybe Reclast taken as an infusion?
The IV drug Reclast (zoledronic acid) is an option after stopping Prolia. Do read Prof Lamy's protocol researchgate.net/publicatio... (Table 4). One thing to be aware of with ZA is the risk of potential side effects which you might have to live with for at least 12 months as well as the fact that it is also more potent than the oral tablets, so comes with a higher risk of osteonecrosis of the jaw, to my understanding. However, from what I've read online, masses of people seem to have had ZA infusions without any problems.
Another protocol for transitioning off Prolia involves cutting down the dosage by 50%, so 30mg every 6 months, for up to 2 years. This would only suit people like you who haven't had side effects from Prolia. It is recommended in a post by the very knowledgeable endodoc on the Inspire website: inspire.com/groups/bone-hea... It was presented in a paper: endocrinologynetwork.com/vi... at ENDO 2021, the result of a study by a team led by Dr Aliya Khan, a highly regarded endocrinologist in Ontario, Canada. In the study, BMD gains were retained on the half dose of denosumab and, more importantly, no rebound fractures occurrred.
In endodoc's post, he recommends ZA as the second most effective choice of a relay drug, starting 3 months after the date of the last Prolia injection (so 3 months before the next Prolia injection is due). There is another post by endodoc further down that page which discusses giving Tylenol before and after the infusion as well as diluting the ZA with saline and administering it over 60 minutes to avoid the post-infusion flu-like side effects many have reported experiencing. This is all great information and gives you a couple of options to discuss with your doctor.
Once you are on Prolia you are on it for life or if you stop taking it, for any reason, you must start on another osteoporosis drug. These doctors should do their homework before putting a patients quality of life at risk. It breaks my heart to read what this doctor is asking you to do. Do not stop. She wants to monitor you closely?The damage will be done before she can do anything about it. She has absolutely no idea. Shocking!
This is pretty shocking. Drug holidays are not recommended for Prolia. They are recommended under certain conditions for people taking bisphosphonates. The latter are grouped together with Prolia under the category of "anti-resorptive" medicines, but Prolia is a very different animal. Drug holidays are not recommended with Prolia!! americanbonehealth.org/bone...
The others have let you know the risks of stopping Prolia without a bridging medication. If you had been taking a bisphosphonate your doctor's advice would actually have been good. Seems she doesn't understand the different ways the meds work. Good thing you are questioning her!
I suggest neither one! Many on this site and other help sites have had devastating side effects. I have had osteoporosis about 20 years. I have taken several things through the years that made little, if any, difference. I am taking everyday supplements, vitamin c, D3, magnesium, selenium, B, potassium, fish oil (just started that), etc. I have learned calcium is BAD after taking it for years, but DO get some in your food. I drink almond milk, but not much. I'm 76 and healthy, 5'5",145 lbs. I just learned there is a brand new injection once per month for 1 year, but don't know the name yet. She says it starts with an 'E'. I took Forteo 4 months, daily injections in 2007--not good. There is also a new test that is more accurate than the old bone density test. I think it's REM. I have my annual checkup Nov. 18th & intend to inquire about the new test and new med. that's supposed to "cure" in 1 year. Yeah, right! Blessings to you, Bob!
I think the new med is Evenity, and you have to go straight onto another bone med afterwards! Yes, the alternative scan is a REMS scan, not yet widely available, but definitely worth it if you can get it.
It may be Evenity. I think Evista is a pill. Evenity brought to us by the crew that gifted us with P rolia. Mamaandme
Hi Bob331 and everyone else looking for additional resources. This is my first post! I am a forum member of Team Inspire on the National Osteoporosis Foundation website. I am 64 years young
and have -3.7 vertebral and -2.5 hip DEXA results. Years ago I tried oral bisphosphonates and that was an absolutely miserable GI experience so I stopped but my osteoporosis did not... Next Monday 15 NOV 2021 I am having my first Reclast infusion. I am an ICU RN with many available resources and did extensive research because I also have CKD3a and avoid nephrotoxic drugs. I found the Team Inspire Forum on the National Osteoporosis Foundation website and it has been a great resource for me and I hope for all of you seeking more information. Kudos to everyone for doing your due diligence before taking any medications! I hope that my self-care to lessen or avoid infusion side effects is a good plan but I remain very cautious about this infusion. Good luck to everyone!
I too have stage 3 kidney disease and find the recommendations for a healthy diet to be a contradiction to the one for osteoporosis. What's good for one should be avoided for the other. We should chose between our bones and our kidneys? 🙄
In what way is there a problem? I looked up kidney diet recommendations and they don't seem to be against healthy foods for bones. You might have to watch fats and sodium, etc, but that's good for us all. And calcium in vegetables is a good source, probably better than dairy.
The kidney diet omits fruit and vegetables high in potassium and phosphorus like oranges, bananas, potatoes, avocados etc. A diet that supports bone health suggests eating plenty of those items. Rock and hard place.
😕
Not sure lower phosphorus is a problem, but I can see less potassium could be more of a concern. If I had to make the choice, I'd protect the kidneys. There's still a lot you can do for bones.
This is what I learned about phosphorus and the kidneys from the National Kidney Foundation:
"Normal working kidneys can remove extra phosphorus in your blood. When you have chronic kidney disease (CKD), your kidneys cannot remove phosphorus very well. High phosphorus levels can cause damage to your body. Extra phosphorus causes body changes that pull calcium out of your bones, making them weak."
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