Prolia treatment for osteoporosis

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

@susan30

I'm at -2.9 for my hip & since I'm in rural N. Dakota I hv only a GP Dr & he suggested Prolia . I'm a bit afraid because even tho there are many good reviews, there are also reviews that sound awful. I have Microscopic Colitis & am taking the steroid med Budesonide 8 wks on & 8 wks off. My gastro dr says even tho I'm on Budesonide, that its ok to take the Prolia injection. I'm just wondering if I will see bone density increase bec of the steroid Budesonide. Its going to be a wait & see on my Dexascan in 1 yr from now. Today Feb 18, 2019 I'm scheduled for my Prolia injection.

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Susan, do your research. I wish I had as there was a lot that my doctor didn't tell me, and Amgen's TV ads make it sound like a walk in the park. Some people are on Prolia with no problems, and others experience varying degrees of side effects. There are instances of doctors prescribing drugs for osteoporosis when they aren't needed, and others who are experiencing fracturing for whom they are a godsend. Are you on Facebook? There are support groups that are quite active with a lot of patient interaction. I didn't really want to be on Facebook, but my son helped me join with very limited exposure. I am on several groups, and would recommend Osteoporosis – Myths and Facts that is owned by a person with expertise in bone health. I have learned a lot there about diet and supplements as well as the medications. This person is also an expert with DEXA results upon which most physicians base their medication recommendations. It's all confusing, and I have to admit I was ignorant about a lot of this stuff, so over time I have learned a lot. I am also in two Prolia groups – one whose membership is primarily made up of those who have experienced problems. Obviously, people experiencing side effects will be the most vocal. And as always is the case online, you have to sort to those who know what they are talking about, as there is lots of false information on the internet. I strongly recommend that you take your time and get all of the facts before you agree to any medication for osteoporosis.

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I have had no problems on prolia and I’m on my 2nd three or five year round (can’t remember) with the two year intermission. My doc states he’s never had a patient who had problems on it. My bone density has improved. There isn’t a medicine on the market that someone doesn’t have some sort of reaction. Listen to your doctor. They want the best for you

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@mabel343

Susan, do your research. I wish I had as there was a lot that my doctor didn't tell me, and Amgen's TV ads make it sound like a walk in the park. Some people are on Prolia with no problems, and others experience varying degrees of side effects. There are instances of doctors prescribing drugs for osteoporosis when they aren't needed, and others who are experiencing fracturing for whom they are a godsend. Are you on Facebook? There are support groups that are quite active with a lot of patient interaction. I didn't really want to be on Facebook, but my son helped me join with very limited exposure. I am on several groups, and would recommend Osteoporosis – Myths and Facts that is owned by a person with expertise in bone health. I have learned a lot there about diet and supplements as well as the medications. This person is also an expert with DEXA results upon which most physicians base their medication recommendations. It's all confusing, and I have to admit I was ignorant about a lot of this stuff, so over time I have learned a lot. I am also in two Prolia groups – one whose membership is primarily made up of those who have experienced problems. Obviously, people experiencing side effects will be the most vocal. And as always is the case online, you have to sort to those who know what they are talking about, as there is lots of false information on the internet. I strongly recommend that you take your time and get all of the facts before you agree to any medication for osteoporosis.

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THANKS so much for your quick response….I just CANCELLED my Prolia shot 10 min before you wrote me…..I felt it might be bad for me & with no Endocrinologist here in N Dakota I plant to go out of state to Cleveland Clinic soon as this snow melts. 2 wks ago I read up on a product from Vanc BC ….I ordered it from there so who knows where its made ….but its called AlgaeCal. Lots of good reviews but like you said maybe there are some people that dont hv good results. AlgaeCal.com When I was searching osteoporosis help online that came up so I read about it for 2 wks then decided why not order it & try it for 6 mos……you might hv heard of it. It should arrive sometime this week ….gel caps 4 per day . With my Microscopic Colitis that gives me much trouble with diarrhea & cramping in stomach I was concerned to get MORE problems going with taking the Prolia injection. Please stay in touch…..I didnt know anyone who was on any meds for osteoporosis…… My T-score scared me…..my GP is an old codger here who had his RN call me to say that he suggested Prolia because he hates Fosamax…..well I had read up on Fosamax & I didnt want that med !
This GP dr is only good enough for easy stuff…not women's bone health. I have to travel 200 miles to my gastro dr & he only sees me 2x a year. I had called his nurse & she ran it by Dr Justino in Minot my gastro dr & he said it was ok to take Prolia with my colitis med Budesonide…..well I want to talk to him in person & ask WHY & will see him March 14, 2019 ~~ I never have felt so 'alone' making a decision about my bones.
4sue.vallejo@gmail.com Susan Vallejo

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@sashasl

I have had no problems on prolia and I’m on my 2nd three or five year round (can’t remember) with the two year intermission. My doc states he’s never had a patient who had problems on it. My bone density has improved. There isn’t a medicine on the market that someone doesn’t have some sort of reaction. Listen to your doctor. They want the best for you

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I do appreciate your comments. I found this site just looking thru Mayo Clinic online.
I will balance out my decision on what I hear from others such as you. Thx so much , Susan Vallejo

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Through interaction with lots of patients with side effects from Prolia, I have learned that the standard response from doctors when fielding complaints is that none of their other patients have ever had side effects. My doctor was even angry with me for bringing anything up. At my age (76) I completely recognize that I could have problems developing that aren't due to Prolia. I took the time and expense to pursue those side effects with other doctors to determine if there was some other cause.

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@susan30

THANKS so much for your quick response….I just CANCELLED my Prolia shot 10 min before you wrote me…..I felt it might be bad for me & with no Endocrinologist here in N Dakota I plant to go out of state to Cleveland Clinic soon as this snow melts. 2 wks ago I read up on a product from Vanc BC ….I ordered it from there so who knows where its made ….but its called AlgaeCal. Lots of good reviews but like you said maybe there are some people that dont hv good results. AlgaeCal.com When I was searching osteoporosis help online that came up so I read about it for 2 wks then decided why not order it & try it for 6 mos……you might hv heard of it. It should arrive sometime this week ….gel caps 4 per day . With my Microscopic Colitis that gives me much trouble with diarrhea & cramping in stomach I was concerned to get MORE problems going with taking the Prolia injection. Please stay in touch…..I didnt know anyone who was on any meds for osteoporosis…… My T-score scared me…..my GP is an old codger here who had his RN call me to say that he suggested Prolia because he hates Fosamax…..well I had read up on Fosamax & I didnt want that med !
This GP dr is only good enough for easy stuff…not women's bone health. I have to travel 200 miles to my gastro dr & he only sees me 2x a year. I had called his nurse & she ran it by Dr Justino in Minot my gastro dr & he said it was ok to take Prolia with my colitis med Budesonide…..well I want to talk to him in person & ask WHY & will see him March 14, 2019 ~~ I never have felt so 'alone' making a decision about my bones.
4sue.vallejo@gmail.com Susan Vallejo

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Be sure to talk to him about what you take when the pollia is finished. I am told that you must follow up with fosamax or similar drug in order to keep any increased bone density!

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@lesleighjarrett

Be sure to talk to him about what you take when the pollia is finished. I am told that you must follow up with fosamax or similar drug in order to keep any increased bone density!

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I did make an appointment to see him after I had decided against the 4th shot, and he said he wasn't concerned because my hips are not as bad as the spine. He asked me to get a DEXA when it is due in May, and that we would go from there. I asked about rebound fractures which occur in a certain percentage of those who stop, and as with side effects, he denied that any of his patients had ever experienced one. This is a doctor in a very large practice, in a major metropolitan area, and one who has specialized in osteoporosis for years. It is rather stunning since rebound fractures are addressed in the Prolia product monograph. There are other physicians in the practice I could see, but that is awkward. I am feeling a little at risk right now in that my bone condition is more precarious than it was when I started. I am paying very close attention to diet, supplements and exercise.

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@retired_nurse

I have been on Prolia for four years . Inject it myself – retired nurse – . Better for me than the oral medications that made my heartburn worse.

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@retired_nurse I'm glad that you have found it helpful without the gastric side effects. Do you know how much of an increase in bone density you have had since you started the Prolia?

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HELP! SUPPOSED TO GET MY SHOT TODAY!! I waited until last minute to research Prolia and after 2 hours in front of the computer, I am ready to cancel my appointment. After a bone density scan last month my doctor recommended that I start Prolia. No other information, just get the shot. I am 58 years old, in very good health, I take no medicine other than the recently recommended Calcium and Vitamin D supplements. I have no known medical conditions other than this recent diagnosis of osteoporosis. The side effects and horror stories here and on other sites terrify me. Ready to cancel. Any words of wisdom?

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@cubbysgirl

HELP! SUPPOSED TO GET MY SHOT TODAY!! I waited until last minute to research Prolia and after 2 hours in front of the computer, I am ready to cancel my appointment. After a bone density scan last month my doctor recommended that I start Prolia. No other information, just get the shot. I am 58 years old, in very good health, I take no medicine other than the recently recommended Calcium and Vitamin D supplements. I have no known medical conditions other than this recent diagnosis of osteoporosis. The side effects and horror stories here and on other sites terrify me. Ready to cancel. Any words of wisdom?

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@cubbysgirl I know exactly how you feel. I'm 65 years old and was advised to get the Prolia injection. My doc said "it's the best we have", and my other doctor couldn't understand why I was worried about side affects. I, like you had my appointment scheduled, but after much research, my gut just told me to stay away from that shot. I'm happy I did, I just try to eat healthy, exercise and work on my balance. Good luck with your decision.

Liked by tikigod18

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I rushed into getting a Prolia injection and regret it. I’ve had terrible side effects and my Oncologist seemed shocked that I had such a bad reaction. I wish I would have researched/tried other options first.

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@veras

I rushed into getting a Prolia injection and regret it. I’ve had terrible side effects and my Oncologist seemed shocked that I had such a bad reaction. I wish I would have researched/tried other options first.

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@veras I’m so sorry you are sick and so sorry about the side effects. I feel your pain. It’s ok to stop. It’s your body. It’s your choice.👍🏻♥️👍🏻

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@cubbysgirl

HELP! SUPPOSED TO GET MY SHOT TODAY!! I waited until last minute to research Prolia and after 2 hours in front of the computer, I am ready to cancel my appointment. After a bone density scan last month my doctor recommended that I start Prolia. No other information, just get the shot. I am 58 years old, in very good health, I take no medicine other than the recently recommended Calcium and Vitamin D supplements. I have no known medical conditions other than this recent diagnosis of osteoporosis. The side effects and horror stories here and on other sites terrify me. Ready to cancel. Any words of wisdom?

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No reason to rush into this. Give yourself time to research Prolia and other osteoporosis drugs. It sounds like your doctor is basing this totally on the results of your DEXA scan. There are many causes of osteoporosis, but doctors don't seem to bother to figure that out, prescribing on the basis of the DEXA alone. And some doctors are prescribing these drugs before they are really needed. I am also learning that there can be discrepancies with the DEXA, and that the technicians often have little training. Did he tell you that you are at risk of rebound fractures when you stop Prolia? Do you have osteoporosis or osteopenia? If you haven't experienced fractures and your scores are in the osteopenia range, treatment may not be warranted. Join some support groups and do your research. Give yourself time to understand what you are getting into.

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@mabel343

No reason to rush into this. Give yourself time to research Prolia and other osteoporosis drugs. It sounds like your doctor is basing this totally on the results of your DEXA scan. There are many causes of osteoporosis, but doctors don't seem to bother to figure that out, prescribing on the basis of the DEXA alone. And some doctors are prescribing these drugs before they are really needed. I am also learning that there can be discrepancies with the DEXA, and that the technicians often have little training. Did he tell you that you are at risk of rebound fractures when you stop Prolia? Do you have osteoporosis or osteopenia? If you haven't experienced fractures and your scores are in the osteopenia range, treatment may not be warranted. Join some support groups and do your research. Give yourself time to understand what you are getting into.

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mabel343, the doctor honestly told me NOTHING. His nurse called after my scan and told me they want me to take Prolia and for me to start taking vitamin D and calcium. Not one more word! I am going to cancel my appointment. My total T- score was 2.5 (I think…I don't even know how to read this report). No fractures. I requested membership this morning to a couple of support groups. Waiting to hear back from them. Thank you for your input.

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@twocents

@cubbysgirl I know exactly how you feel. I'm 65 years old and was advised to get the Prolia injection. My doc said "it's the best we have", and my other doctor couldn't understand why I was worried about side affects. I, like you had my appointment scheduled, but after much research, my gut just told me to stay away from that shot. I'm happy I did, I just try to eat healthy, exercise and work on my balance. Good luck with your decision.

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Thanks! I'm about to cancel my appointment.

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