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

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@windyshores

Personally I am avoiding Prolia based on my doctor's recommendation. But everyone is different. I am doing Tymlos and depending on scans will follow up with either Evenity or a partial dose of Reclast. Good luck!

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Why is your doctor recommending you avoid Prolia?

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@ritafarmer

I did not have any side effects from reclast or prolia, bit my bone density have increased more with prolia.

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I found this post from two years ago. Since you've had a few of the drugs for osteoporosis, if you compare most recent DEXA with one from a few years back, do you have an overall net gain, if I read the posts correctly, you had, at one point in time, a gain from Prolia and none from Reclast? Did you maintain the Prolia gains over time. And, if I may ask, are you on osteoporosis meds currently? I'm not taking any and hope I can avoid them but am considering which one(s) are best if needed at the current time.

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@callalloo

I found this post from two years ago. Since you've had a few of the drugs for osteoporosis, if you compare most recent DEXA with one from a few years back, do you have an overall net gain, if I read the posts correctly, you had, at one point in time, a gain from Prolia and none from Reclast? Did you maintain the Prolia gains over time. And, if I may ask, are you on osteoporosis meds currently? I'm not taking any and hope I can avoid them but am considering which one(s) are best if needed at the current time.

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My bone density did not increase while I was on Reclast. I can't remember right now how many years I have been on Prolia–it's been at least 8 years. My insurance will only pay for DEXA every 2 years, so my next DEXA won't be until this fall. The first 2 DEXA showed a significant increase. The 3rd one showed a decrease. I MUST be on some drug because of my family history of osteoporosis, broken hips and other fractures, and use of steroids for asthma. I elected to stay on Prolia until my next DEXA to decide what to do next. I need to do some research on any new drugs.

I would caution you to not be more afraid of the drugs than the consequences of a fracture. I saw my mother and 3 siblings (2 were men) lose their dependence and eventually their lives due to hip fractures. I had a hard fall on cement last week that was a much harder fall than the ones that caused mom and her siblings to have broken hips. I'm sure that I would have broken a hip if I had not been diagnosed with severe osteoporosis at 41 and treated with drugs for 22 years.

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@ritafarmer

My bone density did not increase while I was on Reclast. I can't remember right now how many years I have been on Prolia–it's been at least 8 years. My insurance will only pay for DEXA every 2 years, so my next DEXA won't be until this fall. The first 2 DEXA showed a significant increase. The 3rd one showed a decrease. I MUST be on some drug because of my family history of osteoporosis, broken hips and other fractures, and use of steroids for asthma. I elected to stay on Prolia until my next DEXA to decide what to do next. I need to do some research on any new drugs.

I would caution you to not be more afraid of the drugs than the consequences of a fracture. I saw my mother and 3 siblings (2 were men) lose their dependence and eventually their lives due to hip fractures. I had a hard fall on cement last week that was a much harder fall than the ones that caused mom and her siblings to have broken hips. I'm sure that I would have broken a hip if I had not been diagnosed with severe osteoporosis at 41 and treated with drugs for 22 years.

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Thanks for the reply and the caution. I have osteopenia and keeping an eye in it. Oddly enough, it's essentially unchanged from six years ago IF the two DEXA scans are equally valid. I did add more exercise and the trio of algae-baes calcium/vitaminD3/vitaminK2 about five years ago so maybe that has helped but bone health is definitely on my radar.

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@hlp123

Thank you so much for your response !!
It is indeed a comfort to know that Reclast should not affect my immune system in the same way that Prolia did. Again, even though I asked each of my doctors if there was any caution with getting the Booster while on Prolia (the insert does advise to ask your physician before being vaccinated), every doctor including my oncologist said there is absolutely no problem getting any vaccination while on Prolia. My common sense asks the question then Why? is there a comment to ask your doctor before being vaccinated. I am cautiously hopeful that Reclast will not exacerbate the side effects of the Booster. I had no problem with the first two COVID vaccinations last March ! This was before I started Prolia.
Again !
It really helps to have the input and added information you contribute !
My best to you !

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The immune system is complicated and Rankl is complicated and I am no expert. But Prolia does affect that part of the immune system. A doc might have to explain, or maybe a pharmacist would be even better! I am glad you are feeling reassured and wish you good luck.

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Thank you for your response.
Let us stay connected !
If you learn of any information to reverse and or treat the side effects of Reclast, please pass on the information. I am starting to experience the same side effects that I had with Prolia now that it has been over a month since I had the Reclast infusion. This is around the same time I started to experience the side effects after I had my second Prolia injection. I have been trying to be hopeful that I will not have the same experience with Reclast.
Thank you

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@ritafarmer

If you are askibg this of me, i am on Prolia. I will have a DEXA in anout 9 months to assess my progress after about 2-1/2 years on Prolia. The next time that i see my rheumatologist, i will ask again anout Prolia.

Just a note about Prolia vs Forteo–Prolia myst be given as an injection in the doctor’s office, so it is covered as part of the doctor by insurance. Since Forteo is self-administered, it is covered by the drug plan part of insurance. Mine was always covered, but i gave always wondered if Medicare drug plans would cover Forteo.

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My doctor wants me to go on Forteo but it isn’t covered by my Medicare drug plan. I’m told Tymos is the same drug but a little less expensive. I’m not sure if I will go on either of those or Prolia. The one thing I don’t like about Prolia is you’re basically on it for life, if you come off, your density drops like a rock. On the positive side, most people I’ve talked to haven’t had any side effects.

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@cat22

My doctor wants me to go on Forteo but it isn’t covered by my Medicare drug plan. I’m told Tymos is the same drug but a little less expensive. I’m not sure if I will go on either of those or Prolia. The one thing I don’t like about Prolia is you’re basically on it for life, if you come off, your density drops like a rock. On the positive side, most people I’ve talked to haven’t had any side effects.

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Do you have osteoporosis or osteopenia? If you have osteopenia, you could probably get by with Prolia. You DO need to stay on it or another drug. My mother and her 3 siblings (2 are male) ALL had broken hips. You need to think of this as keeping you from having compression fractures in your back or a broken hip.

You would see a definite increase in bone density with Forteo. I was "fortunate" to to be on Forteo in my 40's, so my insurance covered it. You should see a slower increase in bone density with Prolia. You would think that Medicare would be proactive in paying for Forteo since Medicare likely spends quite a bit of money on hip replacements and rehab–far more than the cost of Forteo for 2 years.

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@cat22

My doctor wants me to go on Forteo but it isn’t covered by my Medicare drug plan. I’m told Tymos is the same drug but a little less expensive. I’m not sure if I will go on either of those or Prolia. The one thing I don’t like about Prolia is you’re basically on it for life, if you come off, your density drops like a rock. On the positive side, most people I’ve talked to haven’t had any side effects.

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@cat22 both companies have patient assistance programs if your income is low enough to meet guidelines. I am getting 18 months of Tymlos for free. Forteo now has a generic. As I wrote before, I like Tymlos better because the dose can be controlled. You can call Together with Tymlos about the Radius Assist program.

Insurance companies have it all wrong. The bone growing drugs work best when we have not taken Prolia or a biphosphonate. But insurance companies want us to try those first. Insurance also seems to want us to fracture before paying for the bone-growing drugs!

@cat22 does your insurance cover Forteo after you have "failed" another drug or two, or after a fracture?

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My doctor has prescribed Prolia as I have severe osteoporosis and a compressed fracture in my back.
I cancelled the appointment once but just rescheduled with hesitation. I just found this site and it has been helpful to be able to hear from others who are going through the same thing.

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@cmt

My doctor has prescribed Prolia as I have severe osteoporosis and a compressed fracture in my back.
I cancelled the appointment once but just rescheduled with hesitation. I just found this site and it has been helpful to be able to hear from others who are going through the same thing.

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Welcome @cmt to Connect. As you have already discovered we are a sharing group. We can learn so much from each other and then be able to help others walking down the same path.

I have been on some osteoporosis medication for three years now. I am concerned about starting with Prolia. Have you considered starting with a bone development medication like Tymlos or Forteo or the newest one which is Evenity? After building bone then you may choose Prolia or other bone protection medications once you have completed the one or two years of bone development.

Have you started on Prolia already?

May you be safe, free, and protected from inner and outer harm.
Chris

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@cmt

My doctor has prescribed Prolia as I have severe osteoporosis and a compressed fracture in my back.
I cancelled the appointment once but just rescheduled with hesitation. I just found this site and it has been helpful to be able to hear from others who are going through the same thing.

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Please research Prolia well. It's mentioned on some other threads on Mayo Connect as well as this one so you can read of the experiences some people have had with it. I would want to know why my doctor recommended this specific drug versus the myriad other choices available since it is has only been on the market for ten years and is not without some controversy. But read the threads here as there are alternative drugs that might be good alternatives to Prolia and that people have written about taking successfully. Or maybe get a second opinion about which drug to take as you might need to consider a long-term plan and the sequence of drugs taken, over time, becomes very important.

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