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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CL | @lelia | Jul 13, 2019
In reply to @jmanj "For myself, I’m doing the two-year Forteo regimen to build back lost bone density. Then I..." + (show)
@jmanj

For myself, I’m doing the two-year Forteo regimen to build back lost bone density. Then I will follow up with something else to retain whatever improvement has accrued. (Did you do Forteo for two full years? And did your bone density improve?) So for me, the “ordeal” of taking Forteo (actually, the shots are not bad) is to be healthier later. I hope you have continued good health as well, and find the combination of lifestyle changes and/or meds that work for you. It always boils down to each individual and making the personal decision that is best for you. And that can be difficult.

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Thanks. You're right about making the best decision for you. I didn't even make it 2 months with the Forteo due to gastrointestinal side effects causing asthma. They then put me on a 1/4 dose of Reclast for a 6 month period and then a 1/2 dose of Reclast for a 6 month period. The 1/4 dose went over pretty well but the 1/2 dose was ballistic. Have yet to have a bone density scan to see if there is any improvement - it is coming up in August. The 1/2 dose of Reclast is making me take the maximum asthma medicine (which contains cortisone) and restart Prilosec (which is bad for the bones), so it is counteracting the Reclast. The Reclast is also causing labored breathing with exercise so I'm not able to do that as much to help build bone. It should be interesting to learn the extent of the improvement. Reclast is supposed to be the gold standard but it has about 118 side effects listed on the Mayo Clinic drugs section (look up zoledronic acid infusion), many of which are very quality of life threatening and some even life threatening, in my opinion, if you already have some issues which are then exacerbated by the Reclast. My primary doctor now has not told me not to take any bisphosphonates again either, even to try the once a week pill version, and to focus on exercising daily, etc., once the Reclast has left my system.

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2 replies
Mentor
Chris, Volunteer Mentor | @auntieoakley | Jul 13, 2019

I have had 3 prolia injections so far with no side effects. Better than having a bunch of fractures, which is how I found out I had osteoporosis.

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1 reply
sue225 | @sue225 | Jul 13, 2019
In reply to @artscaping "@sue225 Greetings @sue225. I am very interested in your post. I am just starting my 18..." + (show)
@artscaping

@sue225 Greetings @sue225. I am very interested in your post. I am just starting my 18 months with Tymlos after a disastrous attempt at once a month Boniva. Side effects blew me away. What was the determining factor for your choice of Prolia? Did cost play a part? How long will it be before I get a new scan or are there other tests along the way? Thanks for sharing. Have a happy day. Chris

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I'm in Canada and the Prolia injection is around $400.00+. My husband has a private insurance plan which covers the cost. I will turn 65 this year, so my injection will be paid for by the provincial government plan. No cost was not a factor, although Forteo is much more expensive.
As I mentioned in an earlier posting, the black box warning about bone cancer bothered me as there is a big history of cancer on the paternal and maternal side. I also read that some patients experience rapid heart beat upon injecting and I have a well-controlled ventricular tachycardia that needs to stay that way. And I already inject Repatha (to lower LDL) twice a month and that's enough. I like the convenience of the twice a year injections of Prolia.
So; although the specialist's first choice was 2 years of Forteo followed by Prolia in order to build up bone faster, I opted to go with Prolia. A year later, the spine is up 11.5% and the hip 6.5% and the doctor seemed pleased and recommended the third injection which I did get. And that's the story.

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1 reply
sue225 | @sue225 | Jul 13, 2019
In reply to @auntieoakley "I have had 3 prolia injections so far with no side effects. Better than having a..." + (show)
@auntieoakley

I have had 3 prolia injections so far with no side effects. Better than having a bunch of fractures, which is how I found out I had osteoporosis.

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Agree!

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sue225 | @sue225 | Jul 13, 2019
In reply to @lelia "Thanks. You're right about making the best decision for you. I didn't even make it 2..." + (show)
@lelia

Thanks. You're right about making the best decision for you. I didn't even make it 2 months with the Forteo due to gastrointestinal side effects causing asthma. They then put me on a 1/4 dose of Reclast for a 6 month period and then a 1/2 dose of Reclast for a 6 month period. The 1/4 dose went over pretty well but the 1/2 dose was ballistic. Have yet to have a bone density scan to see if there is any improvement - it is coming up in August. The 1/2 dose of Reclast is making me take the maximum asthma medicine (which contains cortisone) and restart Prilosec (which is bad for the bones), so it is counteracting the Reclast. The Reclast is also causing labored breathing with exercise so I'm not able to do that as much to help build bone. It should be interesting to learn the extent of the improvement. Reclast is supposed to be the gold standard but it has about 118 side effects listed on the Mayo Clinic drugs section (look up zoledronic acid infusion), many of which are very quality of life threatening and some even life threatening, in my opinion, if you already have some issues which are then exacerbated by the Reclast. My primary doctor now has not told me not to take any bisphosphonates again either, even to try the once a week pill version, and to focus on exercising daily, etc., once the Reclast has left my system.

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What about Prolia as an option? These asthma/breathing side effects sound very troubling and unpleasant for you.

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2 replies
nurseheadakes | @nurseheadakes | Jul 13, 2019
In reply to @lelia "Thanks. You're right about making the best decision for you. I didn't even make it 2..." + (show)
@lelia

Thanks. You're right about making the best decision for you. I didn't even make it 2 months with the Forteo due to gastrointestinal side effects causing asthma. They then put me on a 1/4 dose of Reclast for a 6 month period and then a 1/2 dose of Reclast for a 6 month period. The 1/4 dose went over pretty well but the 1/2 dose was ballistic. Have yet to have a bone density scan to see if there is any improvement - it is coming up in August. The 1/2 dose of Reclast is making me take the maximum asthma medicine (which contains cortisone) and restart Prilosec (which is bad for the bones), so it is counteracting the Reclast. The Reclast is also causing labored breathing with exercise so I'm not able to do that as much to help build bone. It should be interesting to learn the extent of the improvement. Reclast is supposed to be the gold standard but it has about 118 side effects listed on the Mayo Clinic drugs section (look up zoledronic acid infusion), many of which are very quality of life threatening and some even life threatening, in my opinion, if you already have some issues which are then exacerbated by the Reclast. My primary doctor now has not told me not to take any bisphosphonates again either, even to try the once a week pill version, and to focus on exercising daily, etc., once the Reclast has left my system.

Jump to this post

Get off of the Reclast - regardless of the dosage. Your symptoms are enough to warrant saying you have had an allergic or symptomatic response to it. Infusions are not always the answer. Oral medications are not for those who have any GI difficulties such as GERD. The best routes are the injections - that is why this science is providing multiple options for those who have other disease processes in place. Unfortunately, trial and error is what we are learning in this new field of Rheumtology/Osteoporosis care.

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2 replies
nurseheadakes | @nurseheadakes | Jul 13, 2019
In reply to @sue225 "What about Prolia as an option? These asthma/breathing side effects sound very troubling and unpleasant for..." + (show)
@sue225

What about Prolia as an option? These asthma/breathing side effects sound very troubling and unpleasant for you.

Jump to this post

Look at my comments regarding all of your options. Discuss with your physician what suits you best. Do you have respiratory difficulties like asthma, allergies, etc, etc. All of these meds have SE - what you want is something that provides you with a way to increase your bone density since as we age - our body leaches out calcium because of the low hormones we have on board,

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CL | @lelia | Jul 13, 2019
In reply to @sue225 "What about Prolia as an option? These asthma/breathing side effects sound very troubling and unpleasant for..." + (show)
@sue225

What about Prolia as an option? These asthma/breathing side effects sound very troubling and unpleasant for you.

Jump to this post

Thanks for your concern. I tried the Prolia first, and got an ear infection that lasted 3 months. My doctor said to never get it again, because Prolia hijacks your immune system to build bone. The manufacturer doesn't tell you this, just that Prolia can cause infections, or I never would have tried it. The day after the shot if leaned over to get something off the floor and got really dizzy and almost fell. That was the ear buildup starting to happen. So, if your are susceptible to infections, don't get Prolia.

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1 reply
CL | @lelia | Jul 13, 2019
In reply to @nurseheadakes "Get off of the Reclast - regardless of the dosage. Your symptoms are enough to warrant..." + (show)
@nurseheadakes

Get off of the Reclast - regardless of the dosage. Your symptoms are enough to warrant saying you have had an allergic or symptomatic response to it. Infusions are not always the answer. Oral medications are not for those who have any GI difficulties such as GERD. The best routes are the injections - that is why this science is providing multiple options for those who have other disease processes in place. Unfortunately, trial and error is what we are learning in this new field of Rheumtology/Osteoporosis care.

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Thanks for you advice. I'm definitely getting off it but have 3 months to go. It has caused some throat swelling at times too, so I think you may be right about an allergic reaction. The symptoms move around.

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1 reply
sue225 | @sue225 | Jul 13, 2019
In reply to @lelia "Thanks for your concern. I tried the Prolia first, and got an ear infection that lasted..." + (show)
@lelia

Thanks for your concern. I tried the Prolia first, and got an ear infection that lasted 3 months. My doctor said to never get it again, because Prolia hijacks your immune system to build bone. The manufacturer doesn't tell you this, just that Prolia can cause infections, or I never would have tried it. The day after the shot if leaned over to get something off the floor and got really dizzy and almost fell. That was the ear buildup starting to happen. So, if your are susceptible to infections, don't get Prolia.

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@leliasorry, I did read about your ear infection. But drug-induced asthma is not good either.

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