Prolia and its side effects.
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.
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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!
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.
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!
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
OMG. i’m so sorry to hear that happened to you. i am very hesitant to take Prolia. i have refused multiple timed
please make a report to adverse effects of FDA
Not everyone is the same. Delighted you have made so much progress with prolia. i frequently have severe reactions to drugs.
@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!
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.
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.