prolia side effects???

I should be starting Denosumab, prolia injections shortly.
Could anyone please tell me of their experience with this drug?
Does it work?
How did your body tolerate it as in side effects?
Long term use?

I have been on many op treatments all causing bad side effects.
Of course I'm worried about prolia as it is a 6monthly injection so I can't just stop taking the tablets!

Any info would be appreciated!

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I have been following the Prolia threads in order to make decisions regarding use of this medication, and understand your discouragement, lannw. Unfortunately, these threads, in particular, seem to devolve from discussion of Prolia (all viewpoints useful to consider) to personal 'digs' unrelated to the topic at hand.

This discourtesy is not typical of most members, though, so it would be a shame if you left because of one individual's unkind comments. This is the second time (in the Prolia threads alone) that people have been made to feel so unwelcome that they question their membership. If the thread (and,indeed, the site) is to be helpful in decision-making, I think it's important that all feel comfortable expressing their opinions, and that we do so with courtesy. I hope that you'll stay and continue to share your experiences and point of view.

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My doctor told me the side effects, but mainly stressed if you have bad kidneys. My dentist wasn't concerned with dental work as many discussed. Of course I worry, but feel I have little if any choice in drug at this time. So I will start Prolia as soon as insurance gives ok. For those who have followed me, I increased bone 13 percent in spine, stayed same in hip for the two yrs on Forteo. Still in osteoparosis range in each, no fractures. I was hoping better, but this is ok. Appreciate when discussion sticks to discussion, as there are so many other places to voice platform on other things. I do like to hear the positive and negative though, to help make decisions. I am confused. Do some of you give yourself Prolia injection or do you go to doctor? I was told it was done in arm, avoiding muscle. I also want to know how much supplements people are taking with Prolia? I hear it depletes calcium. Thanks for comments on this.

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Take care Lannw. Thank you for sharing your story with us. I truly hope that things get better for you in the future. Stand tall, smile, laugh, and enjoy life. :)

Please make certain to notify the FDA regarding the side effects that you have experienced. Another thing that would be very helpful is if you also tell your doctor, pharmacist and the Prolia support hotline number (if you haven't already done so).

Once again, good luck to you, and all the best in the future.

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lannw, I am sorry if you decide to leave. I have come close a few times too- too much arguing, not enough support. I am an out and proud bleeding heart liberal! I am proud to help my fellow man when he is down! I spent today at my daughter's graduation- an MSW no less! So she is on her way to helping liberal America too!
I only try to be encouraging here on "Inspire" and hope I have not upset you in any way. I hope you decide to stay :)

@ Kar.... I understand you are going thru tough times, and it sounds like alone, but I hope you can feel better and relax!

Lorrieanne

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Hi Lallie & Lorrieanne,

Please stay, both of you. About 3 months ago, a dear wheelchair-bound woman from Australia vanishes. My note in the forum plus personal message to no avail. Gone with the wind..............

Lorrieanne, informative and compassionate, now beaming with parental pride. Your talented daughter in the limelight. An MSW degree!...............

Kudos!
Vicuña

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Hi all!
Well I certainly opened a kettle of fish with this question!
Thank you one and all for sharing your experiences both good and bad. I have made my decision to decline prolia. I have made this judgement from my own personal side effects from other op medication and from postings on here.
The previous meds I was on SR caused me much stress, the docs said the side effects I was experiencing were not due to SR??
WRONG! Shortly after stopping meds I returned to pre SR. We are all different what one of us can tolerate in meds another can't. Also if you experience side effects that aren't documented doesn't mean your wrong, you know your body better than any doc!

Please, those of you being "Put off" by comments on here (some people know more than God, or so they think"!) stay!
I have had some horrible replies too, thought of leaving myself......but 99% on here are lovely caring, helpful people all suffering from this awful illness and like me hope to be of help if possible. I am so pleased I stayed on, I have made some lovely friends and
it stops you feeling isolated too!

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Hi angellyne,

Yes, a kettle of fish, a can of worms, and now with your encouraging thoughts, a bouquet of flowers! Good to know you stay too. Be well and all the best.................

To Your Health,
Vicuña

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For all members in this thread:
Please keep in mind that blasts and rude comments are not permitted on the community. All posts are read by volunteer moderators as well as TeamInspire. Members may report any replies in question to Inspire or message a volunteeer moderator.
Please be courteous with replies.
Thank you.
Sandi

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Yes, I did report my problems to the FDA, but only because I learned by chance when I read I could on the warnings on another drug. Since the drug was an injection in the doctors office I was never told of the possible side effects. One thing I do wonder though is how it can be said that Prolia has prevented fractures in thousands of people. Maybe those fractures were prevented by increased use of vitamin D and/or calcium or maybe people increased their exercise or perhaps it was just plain luck that they didn't fracture. I took Fosamax between 2002 and August 2007 and yet I had a spine fracture just lying in bed in Nov. 2007.
I do appreciate people who asked me to stay. Lallie

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Lannw, please also notify your doctor(s), your pharmacist, and the Prolia hotline number.

Take care.

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Iannw, I'm sorry that I haven't responded before now. I was completely turned off by the response as well. I am very sorry that you feel as though you should leave. I also contemplated it, but then I thought about how much I have learned on this site, and how many others out there have had a similar experience, I believe it is only through these discussions we will discover why some of us are affected and why others are not. You've been through a terrible time, and I hope that your healing has begun. I do hope that you stay as your experience is important.

angellynne54 thanks for your response too. When I first joined, I posted a similar question, but chose a different outcome. I wish you all the best with your decision.

Little Sparrow, my father and grandfather had multiple myeloma which is what initially caught my attention. The only difference between Xgeva and Prolia are the dosages. Given how ill I was on the Prolia dose I received, I shudder to think what the Xgeva dose might have done to me. I still think that it would only be prudent for Amgen to try to figure out why Xgeva caused so many deaths. For those of us who may be genetically predisposed, it might be relevant.

For those who trust newly approved drugs, I think you are courageous. My opinion stems not only from my experience with side effects, but also from the fact that I was switched to Prolia due to the risk of atypical femoral fractures. One week after I had my shot, Health Canada issued an advisory including these fractures on the list of possible side effects. If I had waited only one week, it is likely that my doctor would not have advised me to have the shot. If you are the 1 in a million statistic that gets hit by lightning, you likely would be wary of stepping out in thunderstorms. I intend to be more cautious in future, but that is based on my experience and my risk to benefit consideration.

Lorianne and Vicuna, thank you also for your positive and supportive contributions. All the best to you too!

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Hi Gluten-survivor,

Thank you for your friendly, courteous post. I like the way you address folks by name.................

I respect everyone's right to choose what's best for them. Unfortunately for you, Prolia backfires. Your current protocol unknown to me. May I suggest a very revealing podcast interviewing a holistic (integrative) doctor? Impressive credentials: Stanford-trained and board-certified 20 years in Internal Medicine plus a PhD. Simply type "PixelPixie" in the search box (upper right) and click/tap on Find It. Then scroll down to "Interview with Dr. Kim Millman"..................

Do you see the recent thread "47 and new here!?" For her, side effects from Fosamax, not Prolia. You are both the same age. You may possibly offer some support/knowledge. All the best for you, Gluten-survivor..................

Be Well,
Vicuña

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Yes, gluten_survivor, I agree with much you said. In my case if I had started on Inspire sooner (before injection in late 2010) I would have looked into the side effects before agreeing. What makes me bitter is we are unpaid guinea pigs. Not only did I pay for the drug, but I am also paying 2 doctors to help me get over the side effects, and for an otherwise unnecessary CT scan.
As for the unpleasant posting, I probably overreacted. Should have just told her to read "Unsafe at any Speed". If the car she drives is safe it is thanks to people such as Nadar who took on the car companies. Lallie

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Has anyone with heart disease taken Prolia? My internist sent me on a "Fosamax vacation" 2.5 years ago after being on it for several years. I continue to take Evista for osteoporosis. She recommends adding Prolia, but 1) I've had a mitral valve replacement, 2) still have arrhythmia (and may eventually need a pacemaker), and--oh yes--have fluctuating tumor marker levels for possible breast cancer recurrence. I'm 66.

I've read that Prolia increases the risk of endocarditis, so I will talk to my cardiologist at my upcoming appointment this summer. However, if any of you have conditions similar to mine, I'd like to hear from you.

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RedHatter - hi!

I feel badly that a posting I made yesterday somehow did not post and it was one being supportive of the current conversation.
I will not try and re-write it but my main thought is that we all are wanting the best for each other in this tenuous journey with trying to be as well as we can within this osteoporosis maze. Each person's reaction to meds can differ and having these conversations can be helpful.

RedHatter - to your questions, I do not have any heart conditions but did go through a work up by a cardiologist a few years ago as there had been a false reading on a stress test. I can appreciate your concern with wanting what is best so you are not having any effects that would compromise conditions you already have.

I was on Evista for a number of years but when my DEXA score - esp. at the lumbar spine area - was showing loss, I was referred to a specialist who felt that Prolia would work better for me. I was told to go off the Evista for it was not doing any good. So, my input would be that the two are not needed in combination but that is something you'd need to confirm with your own specialist.

Yes, do bring in your cardiologist for consult before going on Prolia and let him/her know of your concerns re: the endocarditis.

I am a breast cancer survivor but with no tumor markers that would raise any flags - had that cancer 26 years ago and am grateful to be cancer free for that long.

I am not sure I am adding much to your questions - but felt I wanted to say this little bit to be a part of the conversation.

Wishing you the best!

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Finished up my 2 years on Forteo. Results were 5% decrease in hip and 5% increase in spine. That of course make no sense to me but now I have to decide what to move on to. Fosamax quit working as well. Prolia sounds good until you get to the negative reviews. Just not sure which direction to go in. My mother eventually died from the spine fractures, so I know how serious this is. Any help is appreciated. Thanks

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Have you checked out strontium citrate? Lots of mis-information about it on this forum, but you will notice that there are few- if any- posts about any side effects members have had. No GERD, no bone pain, etc... no side effects at all for me and I am 15 months into it. Only positive results :)
Lorrieanne

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Thanks so much, larkspur123. I certainly do appreciate your sharing you experience. I will post what the cardiologist advises.

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In all fairness, I too feel that there is a lot of misinformation about strontium citrate on this forum but in a different way. Of course this is only my opinion, and like others who question bisphosphonates even when they have never used them, I question stontium.

Again, only my opinion, but for someone who had OP that warranted the use of forteo and who lost a mother due to OP I certainly would think very carefully about using a unregulated, unproven, substance. If strontium is a consideration, I would consult with my doctor before trying it. It would be awful to have taken forteo for 2 years only to lose what bone you have gained.

I don't think any medication or supplement comes without some type of side effect. It's all about risks versus benefits. Yes bisphosphonates and prolia have the potential to cause problems, but if used properly the risk is very low. And who really knows what will surface as far as side effects with strontium. It is fairly new for treating OP and just recently a new statement (warning) was made regarding CV events. Whether or not this is for the citrate form, I don't know, but as more and more people use it, and as time goes by who can say what side effects will become evident?

I wish you the best in trying to decide what to follow your forteo treatment with!

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You are so welcome, Red Hatter. I know we all will be appreciative of what your cardiologist has to say. I am of the mind that any of our specialists and primary care doctors need to be educated themselves about Prolia with it being fairly new on the market.

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