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.

Profile picture for lylii @lylii

@me75
Well, that cinches it for me! I had decided against Prolia because I had learned that if you stop taking it, you lose all progress you have made. I'm not going to take a drug like this that I would have to stay on forever. No bisphosphonates for me after seeing a friend of my Mom's go through the jaw necrosis. Took Tymlos, but got a big kidney stone from that (no thanks!!). Not many options left, I guess. I'm starting to feel like all of these meds are a bunch of BS - no offense intended to anyone. Thank you for sharing your experience!

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@lylii
Over the years I have tried four drugs for my bones and all caused adverse reactions, so I am done! Prolia weakens our immune system and I had shingles 3 times in 6 months, even after shingles vaccine. My big mistake was stopping HRT at 66! Focus on natural ways to improve bone!!

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I'm done too- I don't even trust the testing anymore. I just read about the HRT this evening - I missed out on the brain and cardiovascular benefits due to the flawed WHO study, but the speaker indicated that the bone benefits would be beneficial at any age. Going to do more research and talk to my gyn about the HRT.

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Hello everyone,

I wanted to share some links that members may find helpful. It is important to remember that each person experiences and tolerates medications differently and treatment decisions should be made while keeping our providers in the loop. Osteoporosis has only a handful of approved medications. They are strong medications that can sometimes carry side effects. While these side effects can seem extremely common, that is not typically the case. Connect is a place to share experiences and to learn from others to have more thorough conversations with providers and medical professionals, but treatment decisions, or non-treatment decisions, should be made between patient and provider.

Here are some useful links about the balance between medications, supplements and exercises:

"Osteoporosis treatment: Medications can help"
- https://www.mayoclinic.org/diseases-conditions/osteoporosis/in-depth/osteoporosis-treatment/art-20046869
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"Osteoporosis: What Mayo Clinic experts wish you knew"
- https://www.mayoclinic.org/connected-care/osteoporosis-what-mayo-clinic-experts-wish-you-knew/cpt-20561803
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"Bone health: Tips to keep your bones healthy"
- https://www.mayoclinic.org/healthy-lifestyle/adult-health/in-depth/bone-health/art-20045060
-------------
"Mayo Clinic Q and A: Osteoporosis and a bone-healthy diet"
- https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-q-and-a-osteoporosis-and-a-bone-healthy-diet/
-------------
"Mayo Clinic Minute: What women should know about osteoporosis risk"

REPLY
Profile picture for Justin McClanahan, Moderator @JustinMcClanahan

Hello everyone,

I wanted to share some links that members may find helpful. It is important to remember that each person experiences and tolerates medications differently and treatment decisions should be made while keeping our providers in the loop. Osteoporosis has only a handful of approved medications. They are strong medications that can sometimes carry side effects. While these side effects can seem extremely common, that is not typically the case. Connect is a place to share experiences and to learn from others to have more thorough conversations with providers and medical professionals, but treatment decisions, or non-treatment decisions, should be made between patient and provider.

Here are some useful links about the balance between medications, supplements and exercises:

"Osteoporosis treatment: Medications can help"
- https://www.mayoclinic.org/diseases-conditions/osteoporosis/in-depth/osteoporosis-treatment/art-20046869
-------------
"Osteoporosis: What Mayo Clinic experts wish you knew"
- https://www.mayoclinic.org/connected-care/osteoporosis-what-mayo-clinic-experts-wish-you-knew/cpt-20561803
-------------
"Bone health: Tips to keep your bones healthy"
- https://www.mayoclinic.org/healthy-lifestyle/adult-health/in-depth/bone-health/art-20045060
-------------
"Mayo Clinic Q and A: Osteoporosis and a bone-healthy diet"
- https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-q-and-a-osteoporosis-and-a-bone-healthy-diet/
-------------
"Mayo Clinic Minute: What women should know about osteoporosis risk"

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@JustinMcClanahan
Thank you for all the great links! I agree about decision making with your doctors as I always have! Also that each one of us is different-what works for one may not another.

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