Fearing risks of Prolia

The endocrinologist went over the side effects and I already have experienced jaw numbing with Fosamax. So that is a concern for the risk of the jaw problems with Prolia. Then if it is a problem, I can’t go off of prolia or it will make the osteoporosis worse. Seems no win to me. I do exercise and light weights but my diet probably doesn’t have as much dairy as it should as I was lactose intolerant. My probiotics seem to have helped that. I take a Calcium Citrate and have seen ads for organic Calcium that is supposed to be better-anyone tried that? I take vitamin D but can’t take vitamin k as i am on a blood thinner.

I was on Prolia for over 5 years and i had severe jaw pain along with hip pain. when i went to an orthodontist for the jaw pain he told me to get off the Prolia immediately! I was never told by my doctor that Prolia should not be taken for more than 4-5 years. I refuse to ever get on it again. I am 72 years young and have always worked out at least 5 times a week doing one hour of aerobic activity along with 45 minutes of weights. Up until two years ago, I was a competitive runner. I will keep doing the exercises as long as my body is able and willing. My DEXA score has unfortunately gotten worse after getting off the Prolia but I am taking AlgaeCal Plus along with AlgaeCal Strontium Boost in the hopes my next DEXA score will show improvement. AlgaeCal is a natural supplement with no side effects. I know I'm taking a risk but I'm not willing to be on Evenity or anything else right now - especially when the side effects could be horrible. Hope you find an answer for yourself. What I've learned is that what works for one person can be a nightmare for someone else!

Hi, RN here.
I tried alendronate , which helped initially...went off of it with better results.
few yrs later much worse dexa results.. I know exactly your worries...me too
I researched, asked others' opinions, and drove myself nuts...prolia vs others...I didnt want to take any...
a nurse friend told me after 2 years of zero side effects...fer scans were much better with zero side effects...so I tried it...
have had zero side effects... scans much improved..
everyone is different, nothing guaranteed...I figured I would either break a bone or have a stroke over worrying...... I gave myself a day to make a decision... and stop all the googling and opinions...Good luck, I know its hard

@sup7401 I was on Evenity for 11 months, Dexa better. Now 8'm borderline osteopenia/osteoporosis. Endo & bone specialists recommended Prolia, but I'm afraid of stopping b/c of side effects & causing spinal fractures. I'm leaning toward Tymlos, since you can control the dosage & it's not a lifetime commitment like Prolia. I, too, have been on chatgpt driving myself crazy & popping atavans. I wish I just stayed on HRT for 2 decades!

I was on Prolia for over 5 years and i had severe jaw pain along with hip pain. when i went to an orthodontist for the jaw pain he told me to get off the Prolia immediately! I was never told by my doctor that Prolia should not be taken for more than 4-5 years. I refuse to ever get on it again. I am 72 years young and have always worked out at least 5 times a week doing one hour of aerobic activity along with 45 minutes of weights. Up until two years ago, I was a competitive runner. I will keep doing the exercises as long as my body is able and willing. My DEXA score has unfortunately gotten worse after getting off the Prolia but I am taking AlgaeCal Plus along with AlgaeCal Strontium Boost in the hopes my next DEXA score will show improvement. AlgaeCal is a natural supplement with no side effects. I know I'm taking a risk but I'm not willing to be on Evenity or anything else right now - especially when the side effects could be horrible. Hope you find an answer for yourself. What I've learned is that what works for one person can be a nightmare for someone else!

I was on Prolia for over 5 years and i had severe jaw pain along with hip pain. when i went to an orthodontist for the jaw pain he told me to get off the Prolia immediately! I was never told by my doctor that Prolia should not be taken for more than 4-5 years. I refuse to ever get on it again. I am 72 years young and have always worked out at least 5 times a week doing one hour of aerobic activity along with 45 minutes of weights. Up until two years ago, I was a competitive runner. I will keep doing the exercises as long as my body is able and willing. My DEXA score has unfortunately gotten worse after getting off the Prolia but I am taking AlgaeCal Plus along with AlgaeCal Strontium Boost in the hopes my next DEXA score will show improvement. AlgaeCal is a natural supplement with no side effects. I know I'm taking a risk but I'm not willing to be on Evenity or anything else right now - especially when the side effects could be horrible. Hope you find an answer for yourself. What I've learned is that what works for one person can be a nightmare for someone else!

@rosem1953 I don't mean to sound alarmist, but are you not taking any bone drugs after stopping Prolia? From what I've heard, that puts you a great risk for fractures. Attached is a good article about this that says, "Significant cellular changes occur when you stop Prolia. When you discontinue Prolia, osteoclasts—those bone-resorbing cells—quickly become active again. An increase in osteoclast activity can lead to an accelerated rate of bone loss, often faster than before starting Prolia, resulting in “rebound fractures.”

You can have "rapid loss in bone density in both the lumbar spine and the hip. The risk of spontaneous vertebral compression fracture increased in the twelve to twenty-four months after suddenly stopping the two year long Prolia treatment phase."
https://melioguide.com/medications/how-to-discontinue-prolia/

@daisy17 After Evenity, I decided yo go on 70 mg of Fosomax until I make a decision. I have 4 different autoimmune diseases, so that's another reason why prolia frightens me. All the options jave side effects, but Prolia, Reclast & Forteo are truly scary
Male endos make light of it.

@lisaberkowitz We have to be our own advocates.