About to grudgingly enter a Prolia treatment. Endo warnings of extreme

Posted by front @front, Feb 19 4:40pm

About to grudgingly enter into a Prolia treatment after two yrs of mild benefit from Tymlos, and after Endo's serious warnings of extreme risks if not..... Would greatly appreciate your reports/comments on:
-Prolia experiences and
-Preparation steps prior to initial infusion/ benefits
Thank you
Front

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Front, I don't have experience with Prolia. It works very well for some patients. I would want you to be aware of the severe rebound fracture effect when not followed by a bisphosphonate, most commonly and most effectively Reclast. Then the best choice depends upon the condition of your teeth and your T scores. Best luck

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Hi Front, you could be my twin. I just finished two years on Tymlos last week, also with minor gains in the spine and minor losses in the hip, femoral neck, and forearm. I am truly bummed about this; I was hoping for much more given all the hype. I was diligent, didn't miss one day over the two years, and yet here we are.

My endocrinologist, who focuses on osteoporosis treatment, also wants me to go back on Prolia, which I took for a couple of years with no side effects and no problems. I can't take alendronate because of longstanding GERD issues and she doesn't like Reclast. All osteoporosis drugs except the anabolic agents bring with them the risk of osteonecrosis, as I understand it.

I know this forum is very down on Prolia, but it works well for my husband and many others. When I took it previously, I didn't have much in the way of gains, but at least I was stable. The biggest issue is that it's hard to go off it, but at my age my doctor says I can just stay on it forever.

Good luck to you. This disease is a miserable thing to deal with; all the treatments have their drawbacks.

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I hear your pain....my endocrinologist wanted rec last for me, but reading the reviews threw me...I am also an RN, with osteoporosis not improving, a spontaneous ankle fracture...no injury....and I spent about a week deciding , researching,talking to my nurse friends in same pickle...
I chose Prolia...it has been 5 yrs of zero side effects, and steady improvement in my scores..
My nurse friends on prolia, also seeing improved scores with no side effects... Good luck with making a decision...its very stressful

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To the responders to my questions on Prolia… your reports were better than I expected… uplifting .. nothing is guaranteed …. but you have helped .. thankful.. wishing you well…

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Front,
I am on Jubbanti, generic of Prolia and all okay. Like you I have many allergies and Prolia still works well. Unlike other bone loss Rx, no problem with my dentist.

The only side effect is that my calcium drops with this Rx, but that is an easy fix with calcium supplements. This is a win-win for me.

I was one another one. Pill taken once weekly, (Fosamax) and had a severe reaction that sent me to urgent care. Then placed on Prolia, generic is Jubbati, and no problems at all.

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Profile picture for anewyorker @anewyorker

Hi Front, you could be my twin. I just finished two years on Tymlos last week, also with minor gains in the spine and minor losses in the hip, femoral neck, and forearm. I am truly bummed about this; I was hoping for much more given all the hype. I was diligent, didn't miss one day over the two years, and yet here we are.

My endocrinologist, who focuses on osteoporosis treatment, also wants me to go back on Prolia, which I took for a couple of years with no side effects and no problems. I can't take alendronate because of longstanding GERD issues and she doesn't like Reclast. All osteoporosis drugs except the anabolic agents bring with them the risk of osteonecrosis, as I understand it.

I know this forum is very down on Prolia, but it works well for my husband and many others. When I took it previously, I didn't have much in the way of gains, but at least I was stable. The biggest issue is that it's hard to go off it, but at my age my doctor says I can just stay on it forever.

Good luck to you. This disease is a miserable thing to deal with; all the treatments have their drawbacks.

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@anewyorker I took the 12 Evenity shots with good gains in spine, but little in femoral neck. Dr. talked about Reclast and Prolia. She seems to be forging ahead with Prolia recommendation without further consultation. I was psyched for the Reclast because that's what was mentioned at the beginning of treatment as followup to Evenity. She did mention my age...78...soon to turn 79. Staying on it "forever" is what concerns me. I fear other health issues or obstacles could get in the way of getting the injection, and then you have the rebound! I am considering reclast, and then Prolia down the road in a year if I backslide. If I do Prolia and have to go off of it, I am concerned as to what other drug would be the relay. I also have IBS, and although my reactions to vaccinations are typical for most people, I always react badly about 2 to 3 weeks after vaccination when the immune system kicks in. I am just curious if you mind me asking your age.

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Profile picture for wizdum @wizdum

@anewyorker I took the 12 Evenity shots with good gains in spine, but little in femoral neck. Dr. talked about Reclast and Prolia. She seems to be forging ahead with Prolia recommendation without further consultation. I was psyched for the Reclast because that's what was mentioned at the beginning of treatment as followup to Evenity. She did mention my age...78...soon to turn 79. Staying on it "forever" is what concerns me. I fear other health issues or obstacles could get in the way of getting the injection, and then you have the rebound! I am considering reclast, and then Prolia down the road in a year if I backslide. If I do Prolia and have to go off of it, I am concerned as to what other drug would be the relay. I also have IBS, and although my reactions to vaccinations are typical for most people, I always react badly about 2 to 3 weeks after vaccination when the immune system kicks in. I am just curious if you mind me asking your age.

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@wizdum we’re pretty close in age, actually. I turned 79 in January. I share your concern about the forever-ness of Prolia for people our age, but I have no idea what else to do.

My endo blew off the idea of Reclast, and I can’t take alendronate, which I believe is less effective than Prolia anyway.

I wish we had better choices.

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Profile picture for front @front

To the responders to my questions on Prolia… your reports were better than I expected… uplifting .. nothing is guaranteed …. but you have helped .. thankful.. wishing you well…

Jump to this post

@frontI am 87 years old and I started Prolia 4 years ago with minimum side effects. Usually after the shot, I get bone pain in a number of sites that go away after a couple of weeks. My scores are stable, but not much gain in bone density! I exercise every day and try to walk 2 miles on my treadmill. I also use light weights and do a lot stretching. I also keep my weight stable, as obesity can complicate bone density!

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I’ve been on Prolia ten years now. I’ve remained steady, no side effects THAT I KNOW OF. My endo seems to want me to remain on it, maybe for life(I am 85) but my PCP says ten years is time to try something else. Is it true we should not go past ten years?

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I have had 10 eventiy shots and my Dr is saying prolia is my next step. Just turned 76, and evenity the first med for osteoporosis I’ve ever been on. I did have really good gains per the Jan 2026 density test.
So to maintain, prolia is his choice.
I’m investigating the diff between prolia and reclast. Has anyone switched them around?
I would be starting it in early summer I think, as last evenity shot is April.
Thanks for any info!

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