1. < Osteoporosis & Bone Health

Prolia treatment for osteoporosis: What is your experience?

Posted by Veruska @veriska, Mar 7, 2017

I received the results from my bone test and they have recommended I start Prolia. I have read the side effects and I am concerned. Has anyone use this drug and if so what side effects have you experienced. Thank you

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Mentor
Chris Trout, Volunteer Mentor | @artscaping | Jan 28, 2020
In reply to @maggieocary1 "I have osteoporosis, have taken Fosomax for over a year; did nothing for me, Dr. wants..." + (show)
@maggieocary1

I have osteoporosis, have taken Fosomax for over a year; did nothing for me, Dr. wants me to get Prolia injections, scared to put this chemical in my body. Due to adverse side effects. Don’t know what to do.

Jump to this post

Welcome to Connect @maggieocary1, You are feeling quite normal......apprehensive, and a bit fearful. I remember those feelings. What do you need to know about other osteoporosis options? Have you been to an endocrinologist for input?

Many of us find this diagnosis quite challenging to accept and deciding on treatment very difficult. What do you need right now that would be helpful?

There are bone-building treatments and here is the link.
https://connect.mayoclinic.org/discussion/forteo-vs-tymlos-1/?utm_campaign=search

Find some joy today. Chris

REPLY
1 reply
maggieocary1 | @maggieocary1 | Jan 28, 2020
In reply to @cireland "I am so sorry. It's such a lonely and scary place to be. There should be..." + (show)
@cireland

I am so sorry. It's such a lonely and scary place to be. There should be reliable studies available that show the percent of people who have adverse effects from each of these drugs, but I haven't found such a study yet. I did a lot of research and decided on Tymlos which is a daily injection. Had loss of appetite in the beginning and some nausea, but my body seems to have adjusted to it. I also wasn't thrilled with the local endocrinologists and did more research and am going to the Osteoporosis Center at UConn about a 2-hour drive, but it's worth it. Have been on Tymlos for a year and just had a bone scan. The T scores for my spine are all in the normal range. I eat well, take supplements and exercise. I am 80 and lead a full, busy life. I am doing more research because I don't want to go on one of the biophosphonates after I finish with Tymlos. Am looking into Naturapaths -- and also reasearching Chinese herbs. Don't be discourage -- there are solutions. There is a FB group -- Natural Remedies for Osteoporosis, which is also interesting. Good luck. If I can be of any help, please let me know. Regards, Carole

Jump to this post

Thank you. I am about 85 percent sure that I will not take the Prolia injections too many have had horrible results

REPLY
1 reply
maggieocary1 | @maggieocary1 | Jan 28, 2020
In reply to @sue225 "@debbiem Eventhough I am having side effects from the Prolia, I do not regret giving it..." + (show)
@sue225

@debbiem Eventhough I am having side effects from the Prolia, I do not regret giving it a go. I will speak to my endocrinologist and see what happens next. Originally she had wanted me on Forteo. Any of the bisphosphanates, (e.g. Fosamax) were contraindicated for me. Fractures have side effects too.

Jump to this post

Yes, I know. Decisions decissions

REPLY
maggieocary1 | @maggieocary1 | Jan 28, 2020
In reply to @artscaping "Welcome to Connect @maggieocary1, You are feeling quite normal......apprehensive, and a bit fearful. I remember those..." + (show)
@artscaping

Welcome to Connect @maggieocary1, You are feeling quite normal......apprehensive, and a bit fearful. I remember those feelings. What do you need to know about other osteoporosis options? Have you been to an endocrinologist for input?

Many of us find this diagnosis quite challenging to accept and deciding on treatment very difficult. What do you need right now that would be helpful?

There are bone-building treatments and here is the link.
https://connect.mayoclinic.org/discussion/forteo-vs-tymlos-1/?utm_campaign=search

Find some joy today. Chris

Jump to this post

Thanks. I need to know that I will not have adverse side effects. Ha ha, who knows. Nobody

REPLY
2 replies
sue225 | @sue225 | Jan 28, 2020
In reply to @maggieocary1 "Thank you. I am about 85 percent sure that I will not take the Prolia injections..." + (show)
@maggieocary1

Thank you. I am about 85 percent sure that I will not take the Prolia injections too many have had horrible results

Jump to this post

@cireland All of the osteoporosis medications have the potential to cause side effects. I have a 72 year old friend who has been on Prolia for almost four years and has no problems.

REPLY
ronnie3716 | @ronnie3716 | Jan 28, 2020

I have my first Prolia shot tomorrow. I have read so many negative side effects from so many people. I have gone on other boards and there are less so. I'm trying to go into this with a positive mindset. I tried Tymlos and after the second week, I thought I had a rock growing in my upper stomach. By the 4th week, I was done. It would be so good if there were analytics on how people react to each drug. I'd be feeling a lot more confident if I even knew 50% had bad side effects. Everyone reacts differently to drugs, that has to be my mantra.

REPLY
1 reply
debbiem | @debbiem | Jan 28, 2020
In reply to @cireland "I am so sorry. It's such a lonely and scary place to be. There should be..." + (show)
@cireland

I am so sorry. It's such a lonely and scary place to be. There should be reliable studies available that show the percent of people who have adverse effects from each of these drugs, but I haven't found such a study yet. I did a lot of research and decided on Tymlos which is a daily injection. Had loss of appetite in the beginning and some nausea, but my body seems to have adjusted to it. I also wasn't thrilled with the local endocrinologists and did more research and am going to the Osteoporosis Center at UConn about a 2-hour drive, but it's worth it. Have been on Tymlos for a year and just had a bone scan. The T scores for my spine are all in the normal range. I eat well, take supplements and exercise. I am 80 and lead a full, busy life. I am doing more research because I don't want to go on one of the biophosphonates after I finish with Tymlos. Am looking into Naturapaths -- and also reasearching Chinese herbs. Don't be discourage -- there are solutions. There is a FB group -- Natural Remedies for Osteoporosis, which is also interesting. Good luck. If I can be of any help, please let me know. Regards, Carole

Jump to this post

Everything I've read and heard from friends....once you come off of Tymlos or Forteo, you almost have to go on something else, as T-scores will once again drop. That tells me that the 'improved t-scores' while on these drugs are due to false readings. If bone density improves, it shouldn't get bad once again when you drop the drug. My dr is strongly advising me to go on Forteo....I'm scared to death of the side effects.

REPLY
1 reply
debbiem | @debbiem | Jan 28, 2020
In reply to @sue225 "@debbiem Eventhough I am having side effects from the Prolia, I do not regret giving it..." + (show)
@sue225

@debbiem Eventhough I am having side effects from the Prolia, I do not regret giving it a go. I will speak to my endocrinologist and see what happens next. Originally she had wanted me on Forteo. Any of the bisphosphanates, (e.g. Fosamax) were contraindicated for me. Fractures have side effects too.

Jump to this post

Any of the bisphosphanates out there "work" because they slow down the body's getting rid of old dead bone. So, it shows up as 'improved density', when in fact, the bone has no room to create new, healthy bone. That's why so many people who come off these drugs actually get fractures and/or have lower density scores on subsequent scans. I know of several people who actually had their first fracture AFTER being on Fosamax for a year....and her DEXA scan was worse than before she went on the drug (she tested several months after coming off the Fosamax). Just not at peace about taking these drugs. Doing OsteoStrong right now, and will see results in 6-9 months.

REPLY
sue225 | @sue225 | Jan 28, 2020
In reply to @debbiem "Everything I've read and heard from friends....once you come off of Tymlos or Forteo, you almost..." + (show)
@debbiem

Everything I've read and heard from friends....once you come off of Tymlos or Forteo, you almost have to go on something else, as T-scores will once again drop. That tells me that the 'improved t-scores' while on these drugs are due to false readings. If bone density improves, it shouldn't get bad once again when you drop the drug. My dr is strongly advising me to go on Forteo....I'm scared to death of the side effects.

Jump to this post

Once you stop Prolia, you need to start another medication. If you don't you are at risk for rebound fractures. Also, everything gained (bone density) is lost fairly quickly. There still isn't a really great medication for osteoporosis. One positive for Prolia is that you can take it (if tolerated) for ten years.

REPLY
cherriann | @cherriann | Jan 28, 2020
In reply to @maggieocary1 "I have osteoporosis, have taken Fosomax for over a year; did nothing for me, Dr. wants..." + (show)
@maggieocary1

I have osteoporosis, have taken Fosomax for over a year; did nothing for me, Dr. wants me to get Prolia injections, scared to put this chemical in my body. Due to adverse side effects. Don’t know what to do.

Jump to this post

Understand your fear. I took Fosomax several different times over a period of years. Did very little for me as well. The side effects and increasing and severe pain in my bones and groin area scared me, and I stopped taking it. I have not taken any drugs for osteoporosis in a number of years now. I feel well and all the side effects eventually disappeared. I eat healthy, exercise and take vitamin D3 faithfully. It is not an easy decision to make on whether to take drugs doctors prescribe and encourage us to take, or try eating more healthy, taking supplements, exercise, etc. without using prescription drugs, or doing a combination of both. I urge you to do as much research as you can, and importantly, read reviews and opinions of those who have osteoporosis and their experiences with drugs and lifestyles to combat bone loss. Good luck and my best wishes to you.

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