Prolia and its side effects.

Posted by canadiancc @canadiancc, Sep 1, 2023

Background: I’m a 79 year old female. Hip replacement in 2015; right knee replacement in 2017; left knee replacement in August 2022. I have arthritis in several parts of my body, including both hands.
A recent bone density test showed I have significant bone loss in parts of my body. Wasn’t able to get appointment with endocrinologist for 4 months. GP prescribed Risedronate 35mg taken once a week. Noticed joint and muscle pain became worse. Taking Tylenol for Arthritis to take the edge off.
Appointment with endocrinologist 3 days ago; she strongly recommended I start having Prolia injections. During my appointment she issued a prescription to my drugstore for Prolia to be started the next day.
Once home, I felt I should look for information on Prolia, only checking unbiased websites. What I found, including patients’ stories about their negative experiences, was unsettling. I’ve heard of doctors saying ‘don’t take any notice of Dr Google’, I’ve found that reliable information and supporting data is available on the internet, including that of the Mayo Clinic. Gut feeling and supporting evidence supported my decision not to start Prolia injections.
I would like to know what percentage of those who tolerate Prolia also have arthritis. Conversely, what percentage of those who’ve had adverse reactions to the drug have arthritis.

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

If I take one Prolia shot and have a bad side effect, how long will this side effect last and what can I do to minimize it or prevent it? If it is so bad that i have to quit Prolia, what do i have to do next and before the next scheduled six month shot, i assume?

Can it be that the side effect will last for days, weeks, years?

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@serious

If I take one Prolia shot and have a bad side effect, how long will this side effect last and what can I do to minimize it or prevent it? If it is so bad that i have to quit Prolia, what do i have to do next and before the next scheduled six month shot, i assume?

Can it be that the side effect will last for days, weeks, years?

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i can only tell you from my experience with prolia i had 1 shot last november and a severe reaction i was given a prednison pack and that did help but as it wore off the side effects came back in early december i suffered my first compresion fracture. by the time it was diagnosed it was pretty much healed so i did not opt for surgery. may of this yr the 6 monhs for the prolia shot was up and some of the side effects were better but i was now taking 10 mgs of the prednisone and methotrexate for ra that had developed. i am 80 myrs old and no one in my family had ra no symptoms or pain before prolia shot. i asked my dr if the prolia shot could have caused the ra and he said possibly we will never know but i know i was fine until the shot. in august this yr i had another compression fracture due to stopping prolia now my dr want me to go on evenity i think not. these drugs are powerful and if you have a reaction the side effects can last for months and in some cases years. i will have ra now forever and will need medication for that. if i could go back i would never have taken that shot it is pure poison. the drs know very little about it bit yet they give it freely. i have done alot of research about it and have heard worse stories than mine and you must be very careful with your teeth and any dental work because it can effect your jaw. i still feel i have effects from the shot but now with the ra it is attributed to that who knows. right now i am doing nothing because i really do not know what to take because if you have adverse effects that medication needs to leave your body before you can try another. just a vicous cycle of pain and uncertainty. i never knew anything about prolia and i do wish someone had warned me so that i could make a decision about it. i have heard from people who took it and it was fine but heard from more who were not. i hope this helps with your decision good luck

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@serious

If I take one Prolia shot and have a bad side effect, how long will this side effect last and what can I do to minimize it or prevent it? If it is so bad that i have to quit Prolia, what do i have to do next and before the next scheduled six month shot, i assume?

Can it be that the side effect will last for days, weeks, years?

Jump to this post

Thank you for your comments. Its becoming very hard to think of viable sequences of these drugs to take for multiple years for which you get some benefit without a whole lot of bad effects.

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@serious

If I take one Prolia shot and have a bad side effect, how long will this side effect last and what can I do to minimize it or prevent it? If it is so bad that i have to quit Prolia, what do i have to do next and before the next scheduled six month shot, i assume?

Can it be that the side effect will last for days, weeks, years?

Jump to this post

Hello @serious, this is a great question. I have moved your discussion and combined it with a discussion titled, "Prolia and its side effects" https://connect.mayoclinic.org/discussion/prolia-and-its-side-effects/.

You can read through a few members' experiences, including positive ones. @canadiancc share(d) some of your same concerns with the listed side effects and how long they could last. @tiredpup1 and @hsum4 shared their experience and had little to no side effects.

@serious, pinning down what side effects we may have and how long they last is really difficult as everyone processes medications so differently. As you have found, some people have no side effects at all and some have had bad experiences. Have you discussed your concerns about the side-effects with your provider and what your steps would be if you happen to experience the more severe side effects of Prolia?

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@me75

I only had two injections of Prolia and started noticing blusters on my gums Then they got worse and started making holes the bone had gotten so soft that it was like a liquid that would come through my gums if I pressed on them, I had never seen or heard of anything like this I started searching on the web and saw pictures of what was happening to me after that I made appointment with a oral surgeon and he was able to save my jaw by scraping out the dead bone it left a hole but the gums finely grew up and I haven't had any more problems. Now I tell anyone not to take Prolia.

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Thank you so much for sharing this information, so helpful.
I wish the doctors recommending these meds would try them out first, and then let us know how they deal with side effect.

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@JustinMcClanahan

Hello @serious, this is a great question. I have moved your discussion and combined it with a discussion titled, "Prolia and its side effects" https://connect.mayoclinic.org/discussion/prolia-and-its-side-effects/.

You can read through a few members' experiences, including positive ones. @canadiancc share(d) some of your same concerns with the listed side effects and how long they could last. @tiredpup1 and @hsum4 shared their experience and had little to no side effects.

@serious, pinning down what side effects we may have and how long they last is really difficult as everyone processes medications so differently. As you have found, some people have no side effects at all and some have had bad experiences. Have you discussed your concerns about the side-effects with your provider and what your steps would be if you happen to experience the more severe side effects of Prolia?

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I did that and he said, "You'll be dead in 5 years". I got another doctor.

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I'm 69 years old and I have Osteoarthritis & Osteoporosis. I am currently, and several years ago, taking Prolia shots every 6 months. I have not had any effects from it at all. I promise you.
People tend to be very negative online and it will scare you.
Be at peace and use wisdom.

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@yesibeleive

I'm 69 years old and I have Osteoarthritis & Osteoporosis. I am currently, and several years ago, taking Prolia shots every 6 months. I have not had any effects from it at all. I promise you.
People tend to be very negative online and it will scare you.
Be at peace and use wisdom.

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I'm 86 and have been taking Prolia (denosumab)for more than 8 years without side effects. It is the only medication I've taken that has shown positive scan results every two years. My diagnosis for Osteoporosis was in 1998. I took years of bi-phosphonate pills (Fosamax), later on a series of infusions of Reclast (Zolendroic Acid), and then was switched to Prolia.
You must be aware that once you start taking Prolia you need to have the injection every six months. Getting it if you are incapacitated at the time might be difficult. I understand that there are some ways to come off Prolia without losing the gains made. If you do not get your shot, you will immediately begin to have a higher risk for vertebral fractures.
Is it recommended to switch from Prolia to another medication (Evenity?) that would give me the same results without the issue of bone loss when stopped?

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After being diagnosed with Celiac Disease in 2019, within a short period of time I was thrown into osteoporosis. It was suggested I start Prolia injections. I started Prolia in December 2021 without any literature or information on the drug (shame on me for not doing my due diligence and relying on my doctor’s request).
It was billed as an infusion when it was merely a shot in the arm and sent on my merry way. When I saw the $6000 price tag and my $300 copay I refused to go back. In April 2023, I fractured my T12 getting into bed. I was then told by a spine doctor that I needed to do something or my life would be further fractures.
So, back on Prolia. The side affects are horrendous with having about 8 on the list. I told my husband I feel like I’m injecting “death.”
What is the answer? I definitely do not want to continue this drug.

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@neverretire

After being diagnosed with Celiac Disease in 2019, within a short period of time I was thrown into osteoporosis. It was suggested I start Prolia injections. I started Prolia in December 2021 without any literature or information on the drug (shame on me for not doing my due diligence and relying on my doctor’s request).
It was billed as an infusion when it was merely a shot in the arm and sent on my merry way. When I saw the $6000 price tag and my $300 copay I refused to go back. In April 2023, I fractured my T12 getting into bed. I was then told by a spine doctor that I needed to do something or my life would be further fractures.
So, back on Prolia. The side affects are horrendous with having about 8 on the list. I told my husband I feel like I’m injecting “death.”
What is the answer? I definitely do not want to continue this drug.

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How many injections have you had? With fractures, it is usually recommended to do Forteo, Tymlos or Evenity.

The problem is that there is a rebound with Prolia when stopped, which usually requires Reclast or Fosamax to avoid. I have read and seen on videos that Tymlos and Forteo are not effective after Prolia but I do not know if that is true after, say, just one shot, or if it is true for a long time. It is also possible that Evenity would work, but you would have to find out if it stops any Prolia rebound that you might deal with. Evenity is quite potent in building bones.

What I mean by "rebound" :When Prolia is stopped, bone density goes down and fracture risk goes up unless that rebound is stopped with another drug. Basically the cells that break bone down, the osteoclasts, go dormant on Prolia and when the drug is stopped, they come roaring back- so to speak.

I hope you can find a really good endocrinologist to guide you in this situation. My first fracture was at T12 from a traumatic fall. If you fractured getting into bed, that is concerning. I later fractured from an unwise movement so it is true, fractures beget fractures, You qualified for an "anabolic" bone builder. Prolia is an anti-resorptive, not an anabolic,

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