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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@cbeasley

My Dr keeps wanting me to go on Prolia. My fear of knee & jaw fractures scare me because I have two knees done & also grind teeth at night. 36” spine fusion & part of neck is fused.
I took Forteo for 2 years before the huge back surgery.
Should I still try Prolia?
Is there something better?
I’m still in pain 24/7 with back & neck too.

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I took 5 Prolia shots and them my doctor said to go off of it. There were problems with prolia. Now an endocrinologist wants to put me on reclast, but trying out fosamax to see if it affected me negatively. I only took one fosamax and I feel like an old lady. Pain in my back and neck where I have a fusion and very stiff. I want to go back to prolia.

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@lilgrammaof7

I took 5 Prolia shots and them my doctor said to go off of it. There were problems with prolia. Now an endocrinologist wants to put me on reclast, but trying out fosamax to see if it affected me negatively. I only took one fosamax and I feel like an old lady. Pain in my back and neck where I have a fusion and very stiff. I want to go back to prolia.

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Correction there were no problems with prolia.

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@callalloo

Osteonecrosis has been responsible for the ejection/rejection/loosening of previously-well-integrated dental implants as bone recedes around the implant. I'm not saying that that's true in your case, of course, but, having two dental implants and a complicated oral/dental history, the osteonecrosis possibility was one that was foremost in my mind when considering any treatment for osteopenia. As was the risk of longitudinal femur fracturing from bisphosphonates. I'm keeping an eye on diet and exercise and hoping that future DEXA continues to show no change or maybe even some improvement.

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And how are you doing now?

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@callalloo

I know it's tricky but at least there are more choices than in the past. And maybe there's some safe way to segue among 3 or 4 of them over the long-term without risk. And maybe more people can achieve a reversal of osteoporosis and maintain that without drugs as @windyshores mentioned the doctor she consulted with has? That would be wonderful!

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Who is the doctor that @windyshores has? I would like to find a doctor at Mayo (Rochester) who doesn't push the drugs! Thank you!

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@pjebp

Who is the doctor that @windyshores has? I would like to find a doctor at Mayo (Rochester) who doesn't push the drugs! Thank you!

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My doctors, as well as Keith McCormick, have always suggested medications for me. Not sure what was meant by that older post. I have 7 spinal fractures, half from trauma and half from osteoporosis.

I tried to get on Fosamax and Forteo years ago. I finally got on Tymlos by ramping up on the dose and am now doing Evenity. Then I will do a 20% test dose of Reclast and try to follow that with at least a half dose.

@pjebp I don't know what doctor or provider would suggest avoiding meds if your DEXA indicates a need. Even Dr. McCormick, who wrote "The Whole Body Approach to Osteoporosis" and "Great Bones," and Dr. Lani Simpson, who long promoted natural approaches, have done meds themselves.

Perhaps that older post refers to the possibility that after my Reclast to "lock in" gains from the other drugs, I might be able to take a break from meds. These meds are all difficult for me. I am very sensitive and have a lot of other health issues. But believe me, the difficulties with meds are worth it compared to fractures.

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I have been taking Prolia for almost 8 years. The problems are that you have to go on another drug when you stop taking it and you will experience some back pain. However, I am losing weight and don't know the cause - hope it isn't the Prolia.

hsum

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Has anyone had a similar scenario?....I just received my first CTx score, and it was really low. Unfortunately, I never got baseline tests. I was given my one and only Prolia injection 8 months ago, and have not had any other treatment before of after.

Following what Dr. R. Keith McCormick in Great Bones, I stopped taking my collagen peptides 48 hours before the CTx (resorption marker) test, and fasted for 13 hours. However, I did not have it done first thing in the morning. It was done at 11:30 am.

Results:
CTx= 115 pg/mL (reference range postmenopausal: 177-1015)
P1NP (bone growth marker)= 11 ug/L (reference range postmenopausal: 16-96 ug/L)

The P1NP was as expected. My Endocrinologist, knowing about the Prolia injection was surprised that the CTx was still so low.

Dr. McCormick says that Prolia can remain effective in some people for up to 9 months. Maybe I'm one oof those people[?],

If you have information, or knowledge of any studies on this, please share.

The only thing I've found so far is a graph on the official Prolia website from a study done showing "Prolia® Effects on Serum CTx Levels Over the 6-month Dosing Interval." Here's the link: https://www.proliahcp.com/dosing-and-administration/prolia-injection-dosing

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I got my first Prolia injection yesterday. I’m 68 years old, 3.0 spine, 2.9 hip. Hoping for the best with minimal side effects. This forum is very helpful. Thank you.

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@contentandwell

@sue225 This is a bridge that I have not had to cross yet but I can really understand your feelings. It is not an easy decision. I don't think adding any drug to your regimen is easy.

I had my PCP appointment yesterday and although I am doing extremely well overall, I am borderline high BP and cholesterol. He would like me to start on medications for them. I told I would think about it, and check out the side effects. He was OK with that. He wants me to speak to my endocrinologist about it too when I see him in the summer. Apparently having diabetes adds to the risks of these things.
JK

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I take medication for cholesterol and high BP. I also have osteoporosis which is painful mostly in wrists, fingers, ankles and knees. I am at crossroads of what to do about my pain.
I do know if one has high BP they need to take medication or you could end up in dialysis for the rest of your life as a good friend of mine has to. Two times per week and it takes the energy out of her until the next dialysis. Getting old is no fun.

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@cher51

I take medication for cholesterol and high BP. I also have osteoporosis which is painful mostly in wrists, fingers, ankles and knees. I am at crossroads of what to do about my pain.
I do know if one has high BP they need to take medication or you could end up in dialysis for the rest of your life as a good friend of mine has to. Two times per week and it takes the energy out of her until the next dialysis. Getting old is no fun.

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@cher51 I have been told by all doctors that osteoporosis is not painful. Until fractures that is. Perhaps you have osteoarthritis? An autoimmune disorder? Are you seeing an endocrinologist or rheumatologist?

I have not heard that high blood pressure leads to dialysis though it can affect the kidneys. Are you being seen by a nephrologist?

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