Prolia Injections

I met with the consultant last week and I will be getting prolia injections every 6 months and taking vitamin D daily - i am wondering about the side effects / outcomes for this treatment? Any information would be appreciated. Thanks

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This is a link to info on Prolia - its actually advice for doctors prescribing this drug in Australia - but seems to have lots of info on it - including side effects.

http://www.nps.org.au/health_professionals/publications/nps_radar/2010/dece mber_2010/denosumab

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Hey bellsandwhistles
I had my Prolia injection 3-21-11 and still waiting for the side effects. Reading the many Nay Sayer comments had slowed down my decision, but than my awful t scores bounced me back to reality. I am still as active and have NO Prolia side effects.

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I'm getting one the 4th of May. Good luck to you :>)

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bellsandwhistles,

Saxon provides an excellent link. Also, make sure you read the prescribing information which is a miserable 17 pages long. Prolia was a long time coming onto the market, given myrid and serioius side effects, FDA approval was a tough road.

And I always remind myself that until a drug has at least a 5 year track record, it is in my view still experimental, to use a phrase. We don't really have a handle yet on the "outcomes" since it is the new kid/drug on the block.

Nay sayers Char, are people who deny something simply for the sake of denying. That's completely different than scrtinizing, and taking a closer, sometimes critical look in an attempt to get as broad a picture as possible, that hopefully will shed light and eventually bring us closer to the truth, which would be in the interest of all patients, including me.

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hey Zeta,
Have you had Prolia or you are reading the adverse comments to make Nay Sayer remarks, I did my homework as I needed to reverse my decreasing bone mass, I have pointed out many reasons why I selected Prolia.
Best of all my Rheumy is not seeing side effects on any of her Prolia patients, no one really knows about long term. For me long term without treatment means major painful disability, I want to keep active. My experience as a RN in nursing homes reminded me of my untreated outcome. Wheelchairs, fractured vertebra, fractured hips, I had one friend that succumbed because of untreated osteoporosis, and her last 10 years of life was complete disability and misery. UGH

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Hi...
I had my first Prolia injection in March of this year. My osteo is pretty awful and I have, like many here, been resisting pharmaceutical treatment because of the side effects.

I finally reached a point where I realized that for me, I had to take a chance.

So far, no side effects!

Another one in a few months...then we'll see after bone density test if it is worth it at all.

A tough decision for any and all of us regarding treatments, but you will know when the time is right.
God bless us all!
Joanie

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Char,

So sorry you feel the need to be defensive and make derogatory remarks. I already explained what it means to be a nay sayer, (something I am not), so won't repeat that as it apparently fell on closed ears.

No easy answers, but I wouldn't touch Prolia given what I've read about it. Some folks with terrible scores never fracture, while some with osteopenia do. It's not that simple.

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Char42
In reading every post you've written on the community, you come across (to me) as a person that would take all the information available into consideration before making a decision. Med decisions are not easy. But the main thing is supporting and respecting the decisions of community members whether we agree with the decision or not. I'm going to look forward to your posts through the years with the expectation that you will remain fracture free.
Sandi

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hey Zeta,
I really am not being defensive but want to give to others why I selected Prolia and listen to your own body. Use your head as those that have not had Prolia are only guessing about adverse events. They cannot say for sure about side effects, only have the facts from reading the side effects. I closely read those side effects several times and discussed it with my Rheumy. She says she is not seeing those side effects and is giving Prolia to women like me. Thin low weight women in their late 50’s and 60’s.
I have not had any obvious fractures, but with t scores of –4.6 to –4.8, loss of 6 % last year, fractures would be on the horizon. Especially scary are vertebra fractures and I am very active and last year I noticed more spinal pain. Now no pain even after having the Prolia injection, but I noticed a wart on my finger knuckle. Probably would have never noticed it but it shows up on my tan hand. I am on the beach most days. Hmmm are warts a side effect of Prolia. LOL

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I like Zeta's point that if we could wait it would be nice to let a new medicine be out there for a few years before we have to try it. In the ideal world that would be a very wise move. In the real world where fractures kill and permanently disable people it might not be good advice. Seems either choice is a huge roll of the dice. You simply can't ignore the impact of not treating osteo in severe cases and the natural methods often fail people as well. Many people with low scores do fracture and have serious issus from that.

I am a believer in carefully choosing your meds and then hitting the natural methods on top of the mainstream treatments.

More meds prove to be safe in the long run than those that prove to have real problems. However we all know of a few terrible stories where a med was pulled or someone suffered from the side effects no matter how rare. It happens but I won't let fear paralyze me into a bad place lifestyle wise.

These are tough personal decisions that must be viewed through our own ability to take risks, disease state, and lifestyle. To maintain my active life style I have no problem taking a bit of a risk on a med that I deem reasonable. I know I am taking a risk on a TNF drug I take now. I don't need a lot of people telling me OMG you are taking what? did you read the side effects to that? They have not walked a mile in my shoes. Yea I read it but I also understand how side effects are reported and the implications of no established cause/effect relationship on new drugs. I also know what my life was like when I did not take the med. It was not a hard choice to make for me. Others will feel very differently

for the record I did turn down the Bis drugs but would have no problems with Forteo or Prolia if my Testosterone, exercise, supplements, and TNF treatment had failed.

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Hi.
I have just posted some details onto the website for the first time.
Its late in Britain, and i am just retiring for the night, but simply wanted to say how i liked the balance you have given to your decision making. It IS tough to make decisions on medications. But in the end one has to " bite the bullet " if one is to protect ones spine, and other unresolvable health issues.
That is all.
Take care.
Peace Lady

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Question: If we are to wait 5 years to start taking a new drug that's on the market, who are these people who will be the first? I also have COPD & if they come up with a new drug to stop the progression or a possible cure, I'm going to do it. Even if it's still in clinical trial. Even if it doesn't help me, it could help a younger person or someone in the future. Someone has to have the courage to be the first. We should thank these courageous people, not belittle them :>)

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Hi Lady, I agree with you completely! I'm not sure if I have the fortitude to be one of the first, but I have to thank those who do that since this is where we get our information from. I've never been in a clinical trial and probably couldn't because of my disability with sitting/standing and walking limitations; but I give kudos to those brave souls who do this. If these trials weren't done, we'd never see any drug come to market, and think of all those who'd lose their lives as a result. Of course I'm referring to all meds, not just osteo. I know too many who's lives were saved with new experimental cancer treatments, that many would have been afraid to try, but now they're cancer free as a result.

It doesn't make sense to me, if your life is on the line, and you hold off on a tx just because a drug hasn't been on the market for ten years. Chances are, unfortunately, that we could die in those ten years, from our disease, just waiting for some treatment to help that hasn't been on the market ten years.

Someone else posted that she'd do just about anything to prevent the pain of constant fracturing, and that I do understand after having had 6 compression fraxs of the spine myself with horrific surgical repairs. When you can no longer tolerate your life as it is, due to pain or other problems, you'll probably take the risk and hope you're one of the group who doesn't have the side effects. But it's still a completely personal decision and we need to support all who struggle with this and finally jump into some form of treatment out of self preservation and not condemn their decision.

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Hi all,
Thanks so much for the information from those people who are actually taking Prolia. We tend to hear a lot from folks who are against any drugs and who haven't taken them. Prolia is a drug my Rheumy and I have spoken about and I've been waiting to hear from anyone whose taken it. Thanks so much. I hope the anti drug people don't take over this discussion.
I guess it will be awhile until we hear about improvements in T scores. I've been off Forteo for more than a year, taking weekly alendronate, and I won't have a DEXA until next November so I have no idea if I've lost the bone I made. I have more pains now, but I haven't fractured as far as I know. Thanks again for this discussion.

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You are very fortunate. Some folks who have taken relclast and done well could say the same about naysayers about reclast. Everyone is different.

http://www.PrescriptionDrug-Info.com/Discuss/Prolia-side-effects-212949_s2. htm

I hope all is well and you ain tons of bone density!!!!!!!!

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Hey Osteochick, I still have no significant side effects, slight lower leg pain, nothing. But I am very active and have been on the biking trails in Milwaukee more than usual. Lifting heavier weights, keeping very physically busy and it feels good as there is less humidity in Milwaukee than my home city. I can breathe thru my big nose.
Hopefully I am increasing bone density and any time I feel some achiness that is my thought. I have noticed that my back soreness has disappeared; back pain is one of the first side effects of Prolia. Go figure as biking generally makes my back sore.
http://bonedocblog.com/index.php/2011/02/14/p528/

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I took my Prolia injection in February, and after a couple of months my rib pain has eased dramatically. Pretty much gone. I have an itchy little rash on my back, that started soon after my injection, but that seems to be my only side effect. I feel a lot better, much less pain than before, I guess I will see next year when I have my next bone scan. Good Luck to everyone.

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Hi Bellsandwhistles,

Have you had the Prolia injection yet? How do you feel? Any results yet? My sister-in-law mentioned the other day that her husband is a happy recipient of denosumab. He had no bad side effects and his bone density has improved. However, each person’s reaction is different, please read the 12 reviews in WebMD (re. link below):

http://www.webmd.com/drugs/drugreview-154218-prolia.aspx?drugid=154218&drug name=prolia&source=1

Since it is relatively new, there will be risks. If you've decided to try Prolia, you will help develop a potential cure which the world desperately needs. Taking bisphosphonates is certainly not the best solution.

Best wishes,
Sylvia * * * * *

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Had my first Prolia injection May 4th. No side affects & I just finished 8 weeks of Pulmonary Rehab. Pretty intensive for me & I functioned quite well :>))

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Had first injection of Prolia. My doctor has been trying to get me to take the Reclast. He finally wore me down saying I was a candidate for a fracture according to my T-score. I relented and he had the paperwork done before I returned home!! Later I was called to make an appointment and told the caller that I had changed my mind.
This happened again. Well, at my last appointment, my doctor raved about this new drug Prolia- by the way was only approved last summer. Finally he wore me down again and I gave in. So far so good. I'm the lazy type and have noticed I'm lazier than before--possible side effect to be listed under OTHER Ha I think I will report it. I'll remember FOSOMAX,FOSOMAX then PROLIA, PROLIA. Lord help us. We need help for so many ladies whose lives are ruined. By the way, I read on one of the drug manufacturer's website BRAGGING that this new drug will be the biggest money maker of all! Shame on them.

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