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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@nurseheadakes

This area of health services for women continues to be a subject of much debate. My maternal grandmother and my mother both had osteoporosis and I have it as well. It seems to run in the family, regardless of how many children we all have had. I have a severe case of it and need to be given medication to assure that my bones remain stable. My grandmother received no treatment because they had nothing then to treat it. My mother fell and broke her hip and thigh bone despite receiving IV infusions of Reclast that were being studied at the time about 10 years ago. I have been studied for the last 10 years for progressive bone loss and have been on Reclast as well but developed an allergic reaction to it 4 yrs ago. I am now on Prolia injections with good results despite still being classified as having severe osteoporsis. I also have a high risk of falling because of constant Vertigo. The physicians are monitoring all of this since there is more to the story than bone mass. I just turned 67 yesterday. Everyone's medical history will dictate which medication is suitable for you to take AND which medication is allowed with the medications you are taking for your other health reasons. I can not take any oral medications for osteoporosis because of my GERD. I also have many allergies to medications that eliminate some of the drugs that are available. Your pharmacist and physicians work to make sure the type of osteo drug is right for you. There may be side effects but consult with the pharmacist - they are your best resource for how the medication will work for you.

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I also cannot take bisphosphanates because of Gerd and a highly sensitive and reactive g.i. tract. Thankfully there are other options (like the Prolia I am on).
No one in my family has/had osteoporosis. I was diagnosed as an adult(or misdiagnosed in my younger years) as a celiac. So during the bone-building years, I was not absorbing calcium and VitD. As a result: osteoporosis.
Be interesting to hear from other celiacs with osteo.
The body is complicated and sometimes challenging to treat.

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@sue25 Yes the body is a wonderful machine but not all are the same you are right . You have to work with your Dr. who knows your conditions. True . Your full health condition before prescribing the med.

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I am finding it so encouraging and helpful to read the posts from everyone in this forum. Like so many of you, I avoided taking medications when I was diagnosed with Osteopenia in my early 40’s. I changed my diet (dropping sodas, sugar, processed foods, red meat, etc.), added supplements (calcium, Vit D, etc.) and increased my exercise. All that slowed my progression. But after full menopause, and knee replacements at age 60 (which I think was the final catalyst) my scores were finally low enough (Spine -3.0, Total Hip -1.8 and Femoral Neck -2.8) I had to acknowledge it was time to do “more”. I’m in the 4th month with Forteo, and will finish out the two year regime. Then I’ll move onto something else (watching the posts on Prolia and Reclast) to maintain whatever gains I get. This Osteoporosis stuff is hard. Nothing that can be prescribed is perfect, and (as so many keep affirming) our bodies and how they react to meds is very personal. Thank you all for continuing to share. It helps a lot.

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@jmanj

I am finding it so encouraging and helpful to read the posts from everyone in this forum. Like so many of you, I avoided taking medications when I was diagnosed with Osteopenia in my early 40’s. I changed my diet (dropping sodas, sugar, processed foods, red meat, etc.), added supplements (calcium, Vit D, etc.) and increased my exercise. All that slowed my progression. But after full menopause, and knee replacements at age 60 (which I think was the final catalyst) my scores were finally low enough (Spine -3.0, Total Hip -1.8 and Femoral Neck -2.8) I had to acknowledge it was time to do “more”. I’m in the 4th month with Forteo, and will finish out the two year regime. Then I’ll move onto something else (watching the posts on Prolia and Reclast) to maintain whatever gains I get. This Osteoporosis stuff is hard. Nothing that can be prescribed is perfect, and (as so many keep affirming) our bodies and how they react to meds is very personal. Thank you all for continuing to share. It helps a lot.

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My story is very similar to yours (minus the knee replacements). Also, my hip number dropped even lower than yours. It was when the endocrinologist said, "I'm getting very worried about you" and highlighted the bone density graph with the yearly downward trajectory that I realized that not taking meds was foolish high risk behaviour.

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@jmanj

I am finding it so encouraging and helpful to read the posts from everyone in this forum. Like so many of you, I avoided taking medications when I was diagnosed with Osteopenia in my early 40’s. I changed my diet (dropping sodas, sugar, processed foods, red meat, etc.), added supplements (calcium, Vit D, etc.) and increased my exercise. All that slowed my progression. But after full menopause, and knee replacements at age 60 (which I think was the final catalyst) my scores were finally low enough (Spine -3.0, Total Hip -1.8 and Femoral Neck -2.8) I had to acknowledge it was time to do “more”. I’m in the 4th month with Forteo, and will finish out the two year regime. Then I’ll move onto something else (watching the posts on Prolia and Reclast) to maintain whatever gains I get. This Osteoporosis stuff is hard. Nothing that can be prescribed is perfect, and (as so many keep affirming) our bodies and how they react to meds is very personal. Thank you all for continuing to share. It helps a lot.

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I too am so thankful for everyone who is staring. I hope and pray the future hold better solutions for our bodies!

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@sue225

If you stop taking Prolia you will lose the bone density you have gained. As long as you replace Prolia with another med, Forteo or for example, a bisphosphonate you will continue to build or maintain bone. All medications have side effects. (Even overthecounter Tylenol can cause liver damage). For some people with osteoporosis, and particularly once you are post-menopausal with little estrogen floating around, diet and exercise will not solve the problem. There is no perfect solution and no perfect drug .The side effects from a hip fracture are bad and often result in an earlier than necessary demise.

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I don't think you've taken the time to really think about this. A pill like Tylenol stays in your system maybe 24 hours and you can quit taking it if you have an adverse reaction. A shot like Prolia stays in your system at least 6 months and there is nothing you an do but wait it out for 6 months if you have an adverse reaction. There is no antidote; there should be for those whose lives have been hijacked by this drug. A hip fracture takes 6 weeks to heal. Maybe I was lucky but I was also careful to do the necessary things to get it to heal properly and I had no lasting side effects from the hip fracture. If I had it to do over again I would just try the bisphosphonate pills, maybe the one a week version. Have also tried the Forteo and Reclast infusion and had very bad reactions to both If the Prolia (and Forteo) don't last, which they don't, what's the point in going through the ordeal????

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@lelia

I don't think you've taken the time to really think about this. A pill like Tylenol stays in your system maybe 24 hours and you can quit taking it if you have an adverse reaction. A shot like Prolia stays in your system at least 6 months and there is nothing you an do but wait it out for 6 months if you have an adverse reaction. There is no antidote; there should be for those whose lives have been hijacked by this drug. A hip fracture takes 6 weeks to heal. Maybe I was lucky but I was also careful to do the necessary things to get it to heal properly and I had no lasting side effects from the hip fracture. If I had it to do over again I would just try the bisphosphonate pills, maybe the one a week version. Have also tried the Forteo and Reclast infusion and had very bad reactions to both If the Prolia (and Forteo) don't last, which they don't, what's the point in going through the ordeal????

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Yes I have thought everything through very clearly. The tylenol was not I admit the best analogy. I delayed treatment for quite a number of years because I am totally aware of potential serious side effects. So far, so good. I have a 72 year old friend who has been on Prolia for seven years without side effects.
In life much is a gamble.

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@lelia

I don't think you've taken the time to really think about this. A pill like Tylenol stays in your system maybe 24 hours and you can quit taking it if you have an adverse reaction. A shot like Prolia stays in your system at least 6 months and there is nothing you an do but wait it out for 6 months if you have an adverse reaction. There is no antidote; there should be for those whose lives have been hijacked by this drug. A hip fracture takes 6 weeks to heal. Maybe I was lucky but I was also careful to do the necessary things to get it to heal properly and I had no lasting side effects from the hip fracture. If I had it to do over again I would just try the bisphosphonate pills, maybe the one a week version. Have also tried the Forteo and Reclast infusion and had very bad reactions to both If the Prolia (and Forteo) don't last, which they don't, what's the point in going through the ordeal????

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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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@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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No, I did not do Forteo first. Forteo was my endocrinologist's first choice for me because I had lost so much bone density over an 18 month period. I know Forteo builds bone rapidly but I didn't like that black box warning about bone cancer. In my family there is so much cancer that I told her I would prefer Prolia which has been her earlier suggestion in prior years. Also I preferred the twice yearly injections. Also, I have a ventricular tachycardia arrhythmia and I had read that some patients experienced palpitations on injection and that issue is under control so didn't want to set it off. Long explanation but the Prolia is giving me good results (perhaps not as good as Forteo). The doctor as I said before seemed happy with results. Sometimes hard to decide what route to take.

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@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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