Anyone used prolia?

Posted by whattodo1 @whattodo1, Sep 21 8:32am

I am 82. Terrible bone density. Prolia is expensive. Anyone been told how many injections make a difference?
Am questioning if it is worth the money.

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move9,
https://pmc.ncbi.nlm.nih.gov/articles/PMC9697712/
Would you take another Prolia injection in 6 months or will you opt for a different medication.

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Profile picture for Maryann @mkoch

broken13: It's actually not a generic, but rather called a biosimilar. But still, semantics don't really matter; it's a copy-cat drug of Prolia. And after 5 successful years on Prolia I got really sick on this copy-cat drug, (called Jubbonti) after being injected with it last month. It's only been on the market for 3 months. The company that has marketed Jubbonti seems to specialize in marketing biosimilars and generics after the patents for the original drugs expire. I am hoping to get an exception approved to only receive Prolia injections, again, in the future. I am glad to hear your sister has been on Prolia twice as long as I have and is doing well with no side effects. Thank you for posting.

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@mkoch
Biosimilars at a cheaper price too. So the problem becomes scary with insurance companies only willing to cover the cheaper version. My sister was advised of this and had to switch over. So far, no difference noticed in terms of side effects for her.

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Profile picture for laura1970 @laura1970

@gravity3 Duke would likely have an excellent program closer to home, but I don’t know

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@laura1970 my neighbor went to a new young endocrinologist at duke and liked him. He is booked into next year. I am calling the dept at John's Hopkins since I'll be there anyway. Will report back. Thanks.

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Profile picture for laura1970 @laura1970

@gravity3 get am appointment early. I got mine two months ago and it’s not until April. My appointment is with Anika Sidhaye, MD but I can comment as I haven’t seen him/her yet

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@laura1970 thank you.

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Profile picture for gently @gently

move9,
https://pmc.ncbi.nlm.nih.gov/articles/PMC9697712/
Would you take another Prolia injection in 6 months or will you opt for a different medication.

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@gently : I'm waiting to see if the healthcare organization my endocrinologist works for will grant an exception for me to have a Prolia injection rather than Jubbonti. I was on Prolia for 5 years with no problems so am willing to try that again. I will not have another Jubbonti injection. If I am not granted an exception I will find an independent doctor who isn't bound by the Sutter network rules. (Might be hard to do as independent physicians are falling by the wayside.)

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Profile picture for gently @gently

tillymack, sure. Just remember that I have no medical background and that many people have success with Prolia.
The biggest danger with Prolia is the Prolia trap. It's difficult to go off Prolia (maybe impossible) without losing some of the bone density gain. The density gains are large and quick only exceeded in speed and density by one other medication, Evenity, It is possible that a patient can stay on Prolia for a long time. After market attention seem to say that Prolia can be safe for ten years, to be extended as the study lengthens. Prolia adds bone without removing the bone underneath that is damaged or fissured. It is modeled bone less vascular, less neural and less porous--heavier bone. While this allows for protection from mass, it isn't the most resilient bone. It's more brittle and has the warning (as do all the medications that prevent remodeling of bone) for osteonecrosis and atypical femur fracture. With either of these effects or if you need dental work, a patient would have to quit prolia. The mainstay after Prolia, after it was discovered that patient whom Prolia "cured" of osteoporosis were suffering multiple fractures, is Reclast. It is thought to halt the onslaught of bone damage if prolia is not followed by another drug. Reclast is not thought to completely control the bone loss or to completely counteract the risk of fracture. And since Reclast and Evenity also risk osteonecrosis, osteonecrosis of the jaw with dental work and atypical femor fracture, these two drugs aren't isn't a great way out.
The trouble begins in the way that Prolia works. It prevents the cells-- osteoclasts--that dissolve our damaged bone from developing. It stops them in the last stage of development. It doesn't precipitate cell death in these cells but collects them. When Prolia is stopped they mature in immediate numbers, releasing their acids on your bones. Prolia is (or was) the only osteoporosis medication that can leave you worse off than if you'd never taken it. Now, with use it has been discovered that Evenity shares this unfortunate fact with Prolia.
But in a very small study involving 16 women and in a larger South Korean retrospective it was determined that Evenity might retain the gains made by Prolia. It this turn out to be true, there may be salvation for this drug.
There are several other problems with Prolia. It suppresses the immune system. so a person is more susceptible to pneumonias and viruses. There are people who have extreme reactions to the drug. There is no way of removing it from you system. It can be incapacitating. And not being active for a year can greatly decondition a person when they are older and can't recover.
What makes me consider it the most dangerous is rebound. There are people on site who have had to quit Prolia because of the atypical femur fractures or because of osteonecrosis of the jaw. It is really a trap because the only medication that can stop rebound from Prolia are those that exacerbate these conditions.
With all these medications we need a lot of luck.
I haven't tried Prolia. I'm partial to the drugs that remodel bone, carrying older damaged bone away before laying down new bone. It is a much slower process.

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@gently I took Prolia for two years. I had 7 teeth removed. My dentist sent me to an oral surgeon. The gum took a bit longer to close (like several months) but the oral surgeon monitored me. I had some bone grow back in the socket, however, he removed it just by pulling out with tweezers. It finally closed. Prolia was not for me. I have severe scoliosis, two collapsed discs and spondylitis. I was in so much pain with last injection in 2024, that I literally couldn’t get out of bed many mornings waking up crying from pain. Mind you I am on long term chronic pain medication. I was switched to Reclast and was sick 2 weeks after infusion. I have had headaches off and on (I don’t get headaches normally). I don’t know. I wish I had taken D, Citrate Calcium and bone strengthening exercises instead. I’m stuck doing these drugs and am not happy my doctor didn’t explain it would be for the rest of my life. Take calcium, exercise, take D and maintain your weight. Really think about it before you start these bone drugs.

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Babby, you are in a good position to switch to the bone building medications. How long ago was your Reclast. It may be good for two years. You might check with bone markers CTX at least at the one year mark. Then you could holiday for a year or less. Then you want to take something; you could start Forteo.
My thought is that it isn't starting the medications that condemns us to a lifetime, it's the osteoporosis itself.
Rarely does anyone have osteoporosis because they haven't taken enough vitamins or have failed to exercise. It really is the loss of estrogen which hits us hardest between 52 and 62 years, but continues to lessen to the end of our days. Prolia and Evenity are the two drugs that can leave your bones worse off than if you'd never taken them. Reclast will stay fracture preventive for many years. With Forteo and Tymlos you have lingering protection because they make your bones stronger, but you'll continue to lose density after stopping them.
I think ( hope) the Reclast headaches will go away in time, when it becomes reduced in your system.
The side effects, if you have any, usually go away right away if you stop the medication.

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Profile picture for gently @gently

Babby, you are in a good position to switch to the bone building medications. How long ago was your Reclast. It may be good for two years. You might check with bone markers CTX at least at the one year mark. Then you could holiday for a year or less. Then you want to take something; you could start Forteo.
My thought is that it isn't starting the medications that condemns us to a lifetime, it's the osteoporosis itself.
Rarely does anyone have osteoporosis because they haven't taken enough vitamins or have failed to exercise. It really is the loss of estrogen which hits us hardest between 52 and 62 years, but continues to lessen to the end of our days. Prolia and Evenity are the two drugs that can leave your bones worse off than if you'd never taken them. Reclast will stay fracture preventive for many years. With Forteo and Tymlos you have lingering protection because they make your bones stronger, but you'll continue to lose density after stopping them.
I think ( hope) the Reclast headaches will go away in time, when it becomes reduced in your system.
The side effects, if you have any, usually go away right away if you stop the medication.

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@gently

You keep referring to Evenity leaving the bones worse after using. Please provide documentation for that statement. That is the only medication I will consider taking.

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njhornung, it wasn't in trials. They haven't done trials without a follow-up for Evenity. It was in a meta-analysis. I'll have to send it after I get back home. It isn't comparable to Prolia rebound. Maybe by the time your year is up they'll have extended the usage recommendations to more than one year.

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