Connect
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.
Like
Helpful
HugInterested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.
Connect
Thank you for your story. They are all so helpful. My side effects include: T12 fracture, high blood pressure, tooth pain, mouth ulcers, severe pain in my spine, UTIs, mild headaches, severe itching arms, back and chest, some constipation.
Trying to get into an endocrinologist to get off Prolia. How many of us started Prolia without any information from the prescribing doctor or the hospital/pharmacy administering the drug? I sure didn’t and if I knew what I know now I would not have joined this fight. There has to be a better way to build bone. I’m very curious to see the results of my bone scan next month.
Thank you @windyshoresm, Thank you for including this very interesting retrospective study. I think everyone should mention this study to their doctors and get their take on it.
-
Like -
Helpful -
Hug
1 ReactionThe input I’ve received here about Prolia trumps the info I did NOT get from my rheumatologist; he just said, “After you’re finished with your (13th dose?? of) Evenity, you’ll start Prolia.”
Not going to do that! Reclast was my stabilizer drug for some years previously and, provided I have not exceeded my lifetime infusion limit, it’ll likely be my future stabilizer.
Thanks to all who have published on this forum - the info may have saved me from a lifetime of Prolia use. I had serious, lasting, side effects from Tymlos - who can say that I wouldn’t have the same or even worse from Prolia after a few injections and not be able to discontinue it. What then, peeps?
Cheers, all!
-
Like -
Helpful -
Hug
3 ReactionsWhat is the life time infusion limit of Reclast? i keep getting conflicting messages on the life time limit of Reclast and also the life time limits of some of these others. There appears to be variation when you stop one and then restart it again after a lapse? What are the allowable lapses?
I have also heard that ReClast is equally effective if given every 18 months and not every year. What does this increased spacing do to lifetime limits?
-
Like -
Helpful -
Hug
1 ReactionWishing you promising results on your upcoming bone scan!
I have not noticed any side affects from Prolia and it been over 4 years now. I follow the recommendation of an injection every 6 months. I too have arthritis but not that bad. I have gout too because of kidney issues from taking Tacrolimus for 2 organ transplants since 2000.
@beanieone Good for you. No doctor should simply proclaim we're doing this drug then that drug with no discussion or patient research/input into their own treatment.