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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tillymack,
Tymlos abaloparatide and Forteo teriparatide the parathyroid drugs.

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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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Thank you @gently for your excellent explanation about the dangers of Prolia. Do you know if there is a study that would show us the percentage of people who have mild side effects versus those with severe side effects? I wish they would include those in the pamphlets that come with the meds.

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Profile picture for gently @gently

whattodo1, Prolia is fast to increase bone density. The trouble is that you can't take a shot or two and go on your merry way because the bone comes off faster and more deeply than it is gained when you quit the drug. When Prolia came on the market it was widely lauded and widely prescribed, no on knew what happens when you quit. Women were suffering cascade fractures in their spines, after seeing great dexa gains.
If you have terrible bone density the osteoporosis medications are worth the cost, because of how your life can change if you fracture.
Sadly, osteoporosis requires continuous medications to prevent fracture. With low bone density, you are best advised to take a bone building drug. My favorite is Forteo. It is expensive, too. And inconvenient. But it builds the best bone and is the safest medication.
You might qualify for financial help through the drug companies if your income is limited.
Are you being offered any choices of medications to take. In my opinion Prolia is the most dangerous.

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Gently: I took Forteo back in the mid 2000s for 2 years and agree it is a good medication for osteoporosis. I suffered no side effects from it. I recently asked my endocrinologist if I could go back on it b/c my hip score hasn't increased being on Prolia for 5 years, just my spine score. The endo. said Forteo works mainly on the spine and I've already improved there with Prolia. But my real question for you, as you seem to read a lot about osteoporosis, is that I happened across and article that suggests that maybe those of us who have had breast cancer should not take Forteo b/c it could awaken dormant cancer cells in the bones. Have you read anything of this nature?

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Profile picture for njhornung @normahorn

One thing to consider with Prolia that does not get the attention it deserves: Prolia reduces one immunity. If it is already low for some reason, Prolia's increased reduction could cause serious problems.

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njhornung: Yes, it does decrease one's immunity and has a long half life. After a month, 50% of it is still in your body.

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Profile picture for tillymack @tillymack

When you say creeping up, do you mean your bone density is improving or worsening? Thank you.

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Yes, getting better , more bone density . But it has been a long journey with tiny increases .
Also , my dentist said if I had to have any dental work done , Prolia does weaken your jaw, so to let your dentist know you’re taking Prolia

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Profile picture for etandme0983 @etandme0983

I was diagnosed with Osteoporosis after a fall that cracked my femur in 2012. I was 57 . I started Prolia shots a yr later ( 1 every six months ) in my Drs office , and had bone density scans every 2 yrs and my insurance paid all but $200.
When I turned 65 , I was on Medicare with a supplement . My Medicare would only pay for the Prolia if I had the injection at an Infusion Center . I still have the bone density scans and my results always show that it is slightly creeping up . I only had a small rash at the injection site after the first dose , and I haven’t had any bone breaks after all these yrs . (I’m 70) and very active .
I would check with your Medicare rep and ask why your shot is so expensive . If you’re not on a supplement to your Medicare , this is possibly why your cost is so high . Prolia is definitely worth it ! Hope this helps .

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There is now a generic brand of Prolia that is cheaper and some insurance plans will only cover this version now. My sister has been on Prolia for 10 years! Took her out of osteoporosis and into osteopenia. No side effects for her.

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Profile picture for shelldct1 @shelldct1

Thank you @gently for your excellent explanation about the dangers of Prolia. Do you know if there is a study that would show us the percentage of people who have mild side effects versus those with severe side effects? I wish they would include those in the pamphlets that come with the meds.

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Hi, shelldct1.
There is this from the FDA's adverse reporting system. ://pmc.ncbi.nlm.nih.gov/articles/PMC10441037/#:~:text=Discussion%20APRs%20are%20common%20among%20people%20who,after%20the%20first%20compared%20to%20subsequent%20infusions.
University of Kansas https://www.ncbi.nlm.nih.gov/books/NBK535388/
Clinical trials all contain this information, but usually it is a fairly select group in clinical trials.
https://fis.fda.gov/sense/app/95239e26-e0be-42d9-a960-9a5f7f1c25ee/sheet/59a37af8-d2bb-4dee-90bf-6620b1d5542f/state/analysis
Looking for specific information is a bit of a struggle. It seems that none of the reporting services or studies are powered for the specific information I want. Shelldct1, if this isn't helpful enough, let me know.

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Profile picture for shelldct1 @shelldct1

Thank you @gently for your excellent explanation about the dangers of Prolia. Do you know if there is a study that would show us the percentage of people who have mild side effects versus those with severe side effects? I wish they would include those in the pamphlets that come with the meds.

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shelldct: On Prolia's own website it states 1 in 11 women taking it will get a bladder infection. For women over 70, a bladder infection is the number one reason for being diagnosed with sepsis. I was put on the wrong medicine for a uti and by the time the urine culture came back to indicate which antibiotic was best, was contacted after the pharmacy closed and had to wait another day, I was admitted to the hospital with sepsis. And, anecdotally, my endocrinologist, when asked, what was the main side effect she saw in her practice she responded "bladder infections." I think I remember coming across a more detailed breakdown of side effects, and the percentage of people experiencing them, on studies posted on the National Institutes of Health website.

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Profile picture for broken13 @broken13

There is now a generic brand of Prolia that is cheaper and some insurance plans will only cover this version now. My sister has been on Prolia for 10 years! Took her out of osteoporosis and into osteopenia. No side effects for her.

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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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Lots of good answers here, just want to stress if you do decide on Prolia, know you cannot quit taking it without relaying with a biphosphonate like reclast, or you have a high chance of spontaneous vertebral fractures. Your doctor should know this and if not, find another one.

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