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.

@neesie0159

I finished Evenity on June 18, and am supposed to start Prolia. Between moving and having to hassle providers, call multiple locations to get sooner appointments for DEXA and for endocrinologist appointment, I am now waiting for prior authorization from insurance for the Prolia, because after over a week since seeing the endocrinologist they still have not submitted it. I have to also find a location covered by my insurance that will give the injections. Had I not moved, my rheumatologist’s office would have had all this taken care of by now. I thought moving to a larger metro area would make getting care easier, but oddly enough wait times are longer for anything. I still wouldn’t have even had my post Evenity DEXA had I not called every imaging provider within miles to get an appointment. Not that I’m looking forward to Prolia, I am actually terrified, but if I am going to do it I just want it over with. Any advice to prepare for it when I finally do get scheduled?

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@neesie0159 are you going to discuss with your doctor whether you stay on Prolia or transition to Reclast? As your probably know, Prolia has a rebound if stopped, with bone density going down and fracture risk going up, apparently, according to my doctor, rather dramatically. There has been discussion here about Keith McCormick's advice ("Great Bones" author) that rebound may be less strong if you don't do more than 3 shots of Prolia, and that then you might even be able to d Fosamax vs Reclast. I don't know much about any of this because my docs rarely use Prolia. Just raising the issue that you can explore with your doctor.

Dr. Ben Leder's video "Combining and Sequencing Approaches to Osteoporosis" has some positive info on the potency of Prolia for bone density, but also shares the same concern about rebound and admits he doesn't use it as much anymore. Still, his charts show strong effetiveness if used as a follow-up. We need more research!

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@windyshores

@neesie0159 are you going to discuss with your doctor whether you stay on Prolia or transition to Reclast? As your probably know, Prolia has a rebound if stopped, with bone density going down and fracture risk going up, apparently, according to my doctor, rather dramatically. There has been discussion here about Keith McCormick's advice ("Great Bones" author) that rebound may be less strong if you don't do more than 3 shots of Prolia, and that then you might even be able to d Fosamax vs Reclast. I don't know much about any of this because my docs rarely use Prolia. Just raising the issue that you can explore with your doctor.

Dr. Ben Leder's video "Combining and Sequencing Approaches to Osteoporosis" has some positive info on the potency of Prolia for bone density, but also shares the same concern about rebound and admits he doesn't use it as much anymore. Still, his charts show strong effetiveness if used as a follow-up. We need more research!

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My new endocrinologist said 2 years on Prolia, then either Reclast or back on Fosamax. This is assuming I tolerate the Prolia without issues. He claims it can further increase my bone density by at least a small amount, and potentially reduce my fracture risk by a large amount. I was really resistant to going on Prolia, but willing to at least try if there’s a chance my spine will get even somewhat better. Evenity got me from -4.6 spine to -3.0. I’m also on low dose BHRT which may have helped as well.
I’m just frustrated that I’m having to constantly be proactive getting things done because medical staff are expecting me to wait indefinitely. My rheumatologist wanted me on Prolia by now, and it looks like it may be another couple of weeks.

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@neesie0159

My new endocrinologist said 2 years on Prolia, then either Reclast or back on Fosamax. This is assuming I tolerate the Prolia without issues. He claims it can further increase my bone density by at least a small amount, and potentially reduce my fracture risk by a large amount. I was really resistant to going on Prolia, but willing to at least try if there’s a chance my spine will get even somewhat better. Evenity got me from -4.6 spine to -3.0. I’m also on low dose BHRT which may have helped as well.
I’m just frustrated that I’m having to constantly be proactive getting things done because medical staff are expecting me to wait indefinitely. My rheumatologist wanted me on Prolia by now, and it looks like it may be another couple of weeks.

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Wow that is a huge gain on Eevnity! I have lately been wondering if it would have been better if my doc did consider short term Prolia before Reclast. Let us know what happens!

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@neesie0159

I finished Evenity on June 18, and am supposed to start Prolia. Between moving and having to hassle providers, call multiple locations to get sooner appointments for DEXA and for endocrinologist appointment, I am now waiting for prior authorization from insurance for the Prolia, because after over a week since seeing the endocrinologist they still have not submitted it. I have to also find a location covered by my insurance that will give the injections. Had I not moved, my rheumatologist’s office would have had all this taken care of by now. I thought moving to a larger metro area would make getting care easier, but oddly enough wait times are longer for anything. I still wouldn’t have even had my post Evenity DEXA had I not called every imaging provider within miles to get an appointment. Not that I’m looking forward to Prolia, I am actually terrified, but if I am going to do it I just want it over with. Any advice to prepare for it when I finally do get scheduled?

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sorry you've had to go through so much here.
I hated making the choice of which drug to choose to take after an ankle fracture, and poor dexa results... but I kicked myself into gear and chose prolia 2 years ago.
just had a bone scan and there is significant improvement....but most importantly There have been zero side effects...
Hang in there and Best of luck

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OMG. i’m so sorry to hear that happened to you. i am very hesitant to take Prolia. i have refused multiple timed

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@proliamistake

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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please make a report to adverse effects of FDA

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@sup7401

sorry you've had to go through so much here.
I hated making the choice of which drug to choose to take after an ankle fracture, and poor dexa results... but I kicked myself into gear and chose prolia 2 years ago.
just had a bone scan and there is significant improvement....but most importantly There have been zero side effects...
Hang in there and Best of luck

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Not everyone is the same. Delighted you have made so much progress with prolia. i frequently have severe reactions to drugs.

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@sup7401

sorry you've had to go through so much here.
I hated making the choice of which drug to choose to take after an ankle fracture, and poor dexa results... but I kicked myself into gear and chose prolia 2 years ago.
just had a bone scan and there is significant improvement....but most importantly There have been zero side effects...
Hang in there and Best of luck

Jump to this post

@sup7401 Prolia can be really helpful with bone density but there is a risky rebound when stopped. Do you have a long term plan to stay on Prolia or are you transitioning to Reclast, and when? It seems Keith McCormick ("Great Bones") has been saying more recently that Prolia might be safe and beneficial for 1-3 shots with a less severe rebound than longer term use, addressable with bisphosphonates. I have not talked with my own endo on this. So many of us lack long term plans!

REPLY
@neesie0159

I finished Evenity on June 18, and am supposed to start Prolia. Between moving and having to hassle providers, call multiple locations to get sooner appointments for DEXA and for endocrinologist appointment, I am now waiting for prior authorization from insurance for the Prolia, because after over a week since seeing the endocrinologist they still have not submitted it. I have to also find a location covered by my insurance that will give the injections. Had I not moved, my rheumatologist’s office would have had all this taken care of by now. I thought moving to a larger metro area would make getting care easier, but oddly enough wait times are longer for anything. I still wouldn’t have even had my post Evenity DEXA had I not called every imaging provider within miles to get an appointment. Not that I’m looking forward to Prolia, I am actually terrified, but if I am going to do it I just want it over with. Any advice to prepare for it when I finally do get scheduled?

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I would appreciate knowing if anyone had "delayed" adverse reactions to Reclast. I have had no reaction after one year of use of Reclast.
An attempt was made to place me on Prolia before switching me to Reclast. I had a delayed adverse reaction to Prolia seven weeks later following the injection.
This reaction was the development of hives. So look for bumps on your skin. I was not treated immediately with Presidone while waiting for an evaluation by the Allergist. So, it became worse without the treatment. The prescriber was denying Prolia as the cause. Has anyone developed hives as a severe allergic reaction to these injections or infusions? Thank you.

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@windyshores

@sup7401 Prolia can be really helpful with bone density but there is a risky rebound when stopped. Do you have a long term plan to stay on Prolia or are you transitioning to Reclast, and when? It seems Keith McCormick ("Great Bones") has been saying more recently that Prolia might be safe and beneficial for 1-3 shots with a less severe rebound than longer term use, addressable with bisphosphonates. I have not talked with my own endo on this. So many of us lack long term plans!

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The M.D. internal medicine knew to stop the Prolia and change over to Reclast within one month. One year on Reclase was successful.
I reported my symptoms with Prolia to the FDA whose number is listed on the medication's insert. This is important to report side effects of any osteo medication.
The Allergist claimed to have another case like mine with Prolia. Just watch your skin for mysterious bumps.

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