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.

@naturegirl5

@neverretire I see an endocrinologist. After taking a complete history and reviewing my chart that shows a sacral fracture in 2023 the endocrinologist recommended Evenity for 12 months (I go once a month to an infusion center for two injections). My endocrinologist said that I was doing everything I could do with diet and exercise for osteoporosis but the fracture changed that for me. So, just as @windyshores posted here Evenity is often prescribed for people like me who have had a fracture.

I suggest that you ask your internal medicine/primary care provider to refer you to an endocrinologist (or rheumatologist). These specialities are well versed and trained in treating osteoporosis. I'm not thrilled with getting those Evenity injections every month but if the medication prevents future fractures I am and will be thankful that I did what was recommended.

@neverretire What will you do next?

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@windyshores

@gently I wonder if, after dealing with rebound with Reclast or Fosamax, it is possible to get on a bone builder. Evenity is so new but maybe that is possible. I don't know if doctors even know.

My friend's doctor put her on Tymlos after Prolia. Leder and McCormick both say this sequence is not effective. What is the answer for those on Prolia who want to get off, beyond addressing rebound?

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The trouble with Prolia is the "resevoir" of preosteoclasts. You need the strongest medication to stop them. Zoledronate has the best mechanisms.
There is evidence that teriparatide therapy is more effective with Prolia. The HD Data trial evidenced that Prolia is able to "fully" inhibit the increased osteclast activity of Forteo It's possible to begin Tymlos or Forteo before the six months of Prolia is exhausted, You'd still need the antiosteoclast-antiresorptive at the end of six months. Would you want to stop the pth with the initiation of bisphosphonates. Maybe not.
I'm not happy with the idea of taking two of these pharmaceuticals concomitantly. Too many averse effects with just one.

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@gently

The trouble with Prolia is the "resevoir" of preosteoclasts. You need the strongest medication to stop them. Zoledronate has the best mechanisms.
There is evidence that teriparatide therapy is more effective with Prolia. The HD Data trial evidenced that Prolia is able to "fully" inhibit the increased osteclast activity of Forteo It's possible to begin Tymlos or Forteo before the six months of Prolia is exhausted, You'd still need the antiosteoclast-antiresorptive at the end of six months. Would you want to stop the pth with the initiation of bisphosphonates. Maybe not.
I'm not happy with the idea of taking two of these pharmaceuticals concomitantly. Too many averse effects with just one.

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Thank you everyone. This is so much info to swallow and digest but it is much appreciated ❤️

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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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Neverretire, it is too much and hard to digest, but what will you do.
We collect symptoms and would add your eight if you get in a talkative mood.

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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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Severe pain in my spine
UTIs
Headaches
Severe itching arms, chest, back
Constipation
Fracture of T12
High Blood Pressure
Tooth pain with no known cause
Extremely tired
Ulcers in mouth

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@gently

Neverretire, it is too much and hard to digest, but what will you do.
We collect symptoms and would add your eight if you get in a talkative mood.

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I did get a referral for an endocrinologist

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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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Hello Ladies - this has been my journey so far, and just needing to VENT!. I have been under the care of an endocrinologist for 10 years because I have a hereditary history of Osteo . Took Fosamax for 5 years and then a break from meds with my T-scores holding. Ended up breaking my wrist last Sept., and Bone density showed my T-scores getting worse.
Dr. said needed to get on something ASAP. My recommended choices were Evenity (monthly injections) or Forteo/Tymlos (daily self admin injections. I chose Evenity and have had 7 injections. Will be getting a Calcium blood test which hopefully shows some improvement. My doctor is recommending that I take Prolia after the Evenity.
I honestly feel our doctors are doing their best, but I don't think there is any one right way about which meds and in what order to take them. Unfortunately there has not been enough long-term research to know with certainty what works best.
I wish everyone a good and safe journey.

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@dianeg77

Hello Ladies - this has been my journey so far, and just needing to VENT!. I have been under the care of an endocrinologist for 10 years because I have a hereditary history of Osteo . Took Fosamax for 5 years and then a break from meds with my T-scores holding. Ended up breaking my wrist last Sept., and Bone density showed my T-scores getting worse.
Dr. said needed to get on something ASAP. My recommended choices were Evenity (monthly injections) or Forteo/Tymlos (daily self admin injections. I chose Evenity and have had 7 injections. Will be getting a Calcium blood test which hopefully shows some improvement. My doctor is recommending that I take Prolia after the Evenity.
I honestly feel our doctors are doing their best, but I don't think there is any one right way about which meds and in what order to take them. Unfortunately there has not been enough long-term research to know with certainty what works best.
I wish everyone a good and safe journey.

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Thank you for sharing your story. This gives me ammunition when I meet with the endocrinologist. I agree that this all seems to be a crap shoot for us and as said before doctors seem to just follow insurance protocol. I’m in this fight to get answers.
I so wish we could all meet together.

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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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Hello @neverretire - I combined you discussion with an existing discussion titled, "Prolia and its side effects." - https://connect.mayoclinic.org/discussion/prolia-and-its-side-effects/ so you could meet other members discussing their side effects and struggles with Prolia.

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https://www.msn.com/en-us/health/other/can-we-withdraw-treatment-in-post-menopausal-osteoporosis/ar-BB1o6Tav?ocid=msedgntp&pc=ACTS&cvid=583f1aee88974a24886a1443198639fa&ei=7

@dianeg77 and others the above article details risks of discontinuing Prolia, and oral or IV bisphosphonates. This is just one of many resources (doctors, books, videos, articles, studies) with info on the risks of ending Prolia. Of the three IV Reclast is the safest in this regard.

If we do Prolia after Evenity (Amgen makes both, and the Evenity website has Prolia as follow-up), the rebound risk of losing bone density and increasing fracture risk is high, apparently. Keith McCormick suggests doing only 1-3 Prolia shots because the longer you are on, the worse the rebound. (In "Great Bones" he also suggests using bone markers for the transition to Reclast.) After Prolia we need Reclast (or Fosamax if Prolia is stopped early). Instead many of us go directly to Reclast after Evenity. I did Tymlos, 4 months Evenity, Reclast. Lots of options!

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