Success with Prolia?

Posted by yanice @yanice, Jan 4 7:08pm

Due to stomach issues, I have been advised to have intravenous injections to treat my osteoporosis. I am leaning towards Prolia. Does anyone have any success stories? It seems all I hear about are the awful side effects.

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

What are the most recent updates on the effectiveness and side effects of Prolia?

REPLY

My first time posting! I was on Fosomax for 14 yrs, then on a drug holiday. Now my doctor wants me to start Prolia. My concern is both drugs have a high risk of an a typical femur fracture. How concerned should I be?

REPLY

Greetings @louise2023, welcome to Connect and a brand new year. I think it is a good time to join our forum. Our mission is one of sharing. Knowledge is power and one of the ways we can increase our personal knowledge is by learning from others. At the age of 80, I am also amazed at the number of folks who have side effects exactly the opposite of someone else after taking the same medication. Our clinicians are also challenged to learn as much as possible about our experiences and tolerances. And then of course there are the results of tests like DEXA scan.

Have you had a chance to ask your doctor/clinician why Prolia has been chosen for you? Perhaps you have some condition like an allergic reaction to bisphosphonates. Or perhaps you take another medication that might not work well with other options.

Have you read about Prolia on the website? All known side effects should be updated and printed there or on their prescribing dosage insert. You can also call the company, Amgen, and talk with a medical professional about your situation. That number is 800-772 6436.

I see you are on a drug holiday from Alendronate. I don't think that will be possible with Prolia. However, please ask one of the folks at Amgen. You don't want to have any fractures.

I don't know what your current bone status might be. Have your scan scores been stable? And just in case you might want to know……Evenity, which is the newest bone builder as well as a bone protector appears to be a 12-month option for some patients if they need more strength. Evenity is also an Amgen product.

You know……everyone is slightly different in how their bodies handle medications. So it is hard to "cut to the chase" so to speak.

Please tell us a little more. Thanks,
Chris

REPLY
@artscaping

Greetings @louise2023, welcome to Connect and a brand new year. I think it is a good time to join our forum. Our mission is one of sharing. Knowledge is power and one of the ways we can increase our personal knowledge is by learning from others. At the age of 80, I am also amazed at the number of folks who have side effects exactly the opposite of someone else after taking the same medication. Our clinicians are also challenged to learn as much as possible about our experiences and tolerances. And then of course there are the results of tests like DEXA scan.

Have you had a chance to ask your doctor/clinician why Prolia has been chosen for you? Perhaps you have some condition like an allergic reaction to bisphosphonates. Or perhaps you take another medication that might not work well with other options.

Have you read about Prolia on the website? All known side effects should be updated and printed there or on their prescribing dosage insert. You can also call the company, Amgen, and talk with a medical professional about your situation. That number is 800-772 6436.

I see you are on a drug holiday from Alendronate. I don't think that will be possible with Prolia. However, please ask one of the folks at Amgen. You don't want to have any fractures.

I don't know what your current bone status might be. Have your scan scores been stable? And just in case you might want to know……Evenity, which is the newest bone builder as well as a bone protector appears to be a 12-month option for some patients if they need more strength. Evenity is also an Amgen product.

You know……everyone is slightly different in how their bodies handle medications. So it is hard to "cut to the chase" so to speak.

Please tell us a little more. Thanks,
Chris

Jump to this post

Many thanks Chris for responding to my question. To be honest my doctor never gave me any other options besides Prolia when I was told to resume treatment. Yes, my scan scores indicate that I am steadily losing bone density especially in my spine. I also do know about the side effects of Prolia. I simply question going on this drug given the risks when it may only possibly stop or slow down my bone decline. Given how long I was on Fosomax, I am already at higher risk of an a typical fracture by starting Prolia that has the same side effects.

REPLY

Can you go on Tymlos, Forteo or Evenity? Tymlos and Forteo build bone. Evenity builds bone and is an antiresorptive like Prolia and the bisphosphonates. though less antiresorptive than the other two.

The problem with Prolia is what to do after you stop it. You cannot take a break or stop without risking a rapid drop in bone density. This is why my doc is not prescribing it. So what does your doc say you would go on after a few years on Prolia? Or does your doc want you on it forever? Long term use may pose the risks that concern you.

I have read studies that show that the bone building drugs are more effective if you don't take bisphosphonates or Prolia. If your scores are severe, your rate of bone loss is significant or you have fractures, insurance may cover the bone builders. Especially since you have tried alendronate. (I am on Tymlos)

REPLY
@windyshores

Can you go on Tymlos, Forteo or Evenity? Tymlos and Forteo build bone. Evenity builds bone and is an antiresorptive like Prolia and the bisphosphonates. though less antiresorptive than the other two.

The problem with Prolia is what to do after you stop it. You cannot take a break or stop without risking a rapid drop in bone density. This is why my doc is not prescribing it. So what does your doc say you would go on after a few years on Prolia? Or does your doc want you on it forever? Long term use may pose the risks that concern you.

I have read studies that show that the bone building drugs are more effective if you don't take bisphosphonates or Prolia. If your scores are severe, your rate of bone loss is significant or you have fractures, insurance may cover the bone builders. Especially since you have tried alendronate. (I am on Tymlos)

Jump to this post

My doctor only discussed Prolia which she recommended for 5 yrs and then zolendronate 1 dose would be given 6 months after stopping Prolia. I am, however, interested in knowing more about Evenity. Because it is so recently on the market, it is hard to get results from people who have completed the 12 month treatment. Thank you for your perspective.

REPLY

I have been on prolia for almost 4 years. I was kept on it as it is best to use since I am being treated for a precancerous be ready condition after two small masses were biopsies. I have had no side effects (always stay hydrated prior to infusion). My bone scans show slight improvement each year. Hope you can find the most appropriate treatment.

REPLY
@texasmimi

I have been on prolia for almost 4 years. I was kept on it as it is best to use since I am being treated for a precancerous be ready condition after two small masses were biopsies. I have had no side effects (always stay hydrated prior to infusion). My bone scans show slight improvement each year. Hope you can find the most appropriate treatment.

Jump to this post

Breast condition. Auto correct 🙁

REPLY

I had my first injection of Prolia at the end of August 2022. I had serious reservations, but my orthopedic doctor said any pharmaceutical has a list of side effects that would scare the pants off you, yet very few people ever experience the bad side effects. Two things she didn't say was that Prolia is an immuno-suppressant and the other is that I will have to take it for the rest of my life. After I got the shot, she talked about the length of time I would be taking it and she stopped about 85 years old, which means she estimates I will only live another 17 years. I have been having fungal infections for the first time in my life that I cannot seem to get rid of. I don't want anymore pharmaceuticals, ever. I want to stop Prolia. I will see an endocrinologist as soon as I can get a referral to determine the best way to stop. I also have some dental problems that started after the shot, coincidence? I am very disheartened at this point and feel I've been lied to by all concerned.

REPLY
@texasmimi

I have been on prolia for almost 4 years. I was kept on it as it is best to use since I am being treated for a precancerous be ready condition after two small masses were biopsies. I have had no side effects (always stay hydrated prior to infusion). My bone scans show slight improvement each year. Hope you can find the most appropriate treatment.

Jump to this post

I started Prolia 10 months ago. I wondered if you would share how much you improved each year on Prolia?

REPLY
Please sign in or register to post a reply.