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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Before you continue more shots, I suggest doing as much research as you can on the drug you have been given. Any new health issues that you are now experiencing may or may not be related to Prolia, but there are so many, many side-effects from the osteoporosis drugs on the market that everyone taking them needs to find out as much as they can about them....and I highly suggest you also read and search out sources where people who have actually used these drugs share their experience with them.

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I have stopped it and Im not taking any more

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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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@mabel343

Did you go on another drug after stopping Prolia? My fourth shot was due a month ago, and I have decided I just can't continue with it. With the potential for rebound fractures, I feel trapped. With most medications, I review the potential side effects and experience none of them. With Prolia, I can tick off quite a few on the list. Just recently I have started experiencing jaw pain, which is really scaring me.

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@mabel343 I’m not worried about going off. One Dr. said keep taking lots of calcium and Vitamin D and try not to fall! Exercise to improve balance and hope for the best. This drug has not been used long enough in my opinion. I ask every Dr. I see including orthopedic surgeons and no one seems to know much about it. My joint pain is going away very slowly except for hips and lower back. Only you know your body and what’s normal for you. So you have to use your best judgment.👍🏻👍🏻👍🏻

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@veriska

I want to thank everyone for your reply. It helps with my decision. I am at -2.9. Has anyone started Prolia at or above that degree?

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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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@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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