Prolia and its side effects.

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.

The 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!

What 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?

Wishing 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.

@serious,

These are the very questions I've been asking. Does anyone have any information to share?

Have a great week, all! Cheers!

I finally got an appointment with an endocrinologist in September. It seems to me that the more shots you get the more the side effects are impressive. While my bone scan shows a significant increase in bone density, the side effects are too great for me out of the 15 side effects that they post. I have 11 of them. There has to be something better.

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?