Prolia Side Effects (Page 39)
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I would like to know of any side effects others may have experienced after receiving Prolia infusions. Up to now I have none.

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Re: Laura (# 2395)

Yes it was, Laura. My white blood count was very high and the front tooth developed an infection. I was put on antibiotics which helped and had a root canal and crown but the damage from the infection was so vast( eaten away a lot of the tooth) that I finally had to have the tooth pulled. I have undergone a bone graft as I had so much bone loss and have to wait now for the implant and then another while for the actual tooth! Almost a year and a half total.
Considering the fact that I had had 2 surgeries on my jaw due to TMJ I was concerned about even taking Prolia but the prescribing Dr. told me I was being an alarmist and not to worry....she'd never seen any of her patients have a negative reaction. I,too do not have great bones and in fact, I'm in a cast at the moment with a broken wrist. I'm terrified to take any other bone medication for fear of an adverse reaction. Up to 2 years ago I was fine and then , th "s---" hit the fan------Prolia!

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Poodle (# 2380) --

Haven't talked to ya'll in a long time - I slowly have resumed life. Just returned from DesMoines and an art show, a miracle. However my back has been covered in a burning rash for weeks, the rash attacks different parts of the body - third dr. visit and I am on a triage of creams....working through the dental work as I can afford....sudden and debilitating exhaustion at times....but I do have some of my life back. Walking without any aids now, after two month P.T. (I tested as only having 20% of normal balance - I am up to 50%.) I guess it may never end - I have yet to hear of any lawsuits that have been successful. Anyway, just a check in with folks, and Poodle, The PT was in a salt water pool. I've since also had esophageal surgery to put my stomach back where it should be and to repair esophagus. Don't know if that had anything to do with the Prolia. But I do have ulcers & lesions in stomach. The doctor says that is not Crohns which I suffered from greatly until about 15 years ago. The ulcers - hernia - resurgence from Prolia? I don't know. My thoughts come back to all those still suffering from this drug from hell.

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Re: Laura (# 2395)

I lost all of my top teeth after taking Prolia. They broke off at the gum line. My dentist said it was caused by Prolia. Had implants which are very expensive but the dentures were awful. I reported to FDA and the drug company but I doubt it helped.

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Judy (# 2384) --

Was this problem with your teeth caused by prolia ....this problem with the jawbones scares the hell out of me this is why l have decided not to use the drug but my bone density is just getting worse but I don't know what to do

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Sal (# 2376) --

I am 55 & diagnosed at 30 with Osteoporosis & took Actonel for 1yr then read side effects so stopped. My recent Bone Density in hips is very bad so they want me to start Prolia like they have advised for last 4 yrs as T score is getting worse. I was thinking seriously of starting this med until I read about all the terrible side effects, it scares me as my Remedial therapist who is very knowledgeable even said I need to start meds as I don't want to break a hip & end up in a wheelchair for the rest of my... Can someone please help me, I live in Brisbane Australia. I read about all the Court cases happening regarding the other meds for Osteo & they are no better. I cant do high impact exercises because I have damaged my left hip & shoulder lifting my father after a fall 6 yrs ago, I am still doing physio after getting myself off a walking stick 4yrs ago. The Drs told me I would never get off the stick, I have to exercise every day just to keep myself walking, although not long distances.

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Re: Lizzie (# 2393)

I was intrigued, so I did a search, for some reason it wasn't posted. Anyway, there have been reports of this side effect.

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Re: sal (# 2391)

Thanks- I did not think about pelvic floor muscles, but that sounds like what is happening to me. No signal, no warning, just liquid gushing out. Fortunately not constant, but always without warning... it is like the floor fell out.

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Re: Lizzie (# 2390)
It has not as of yet been reported as such but it does cause UTI infections. Are you really 100% sure that is not part of the leakage problem? Prolia causes more and more problems every month it seems. I have been off of it for years now and still have flare ups of gluten intolerance and really bad hair -- shedding like a dog. Want my DNA - it's all over every store I have been in by means of my hair falling out. Finally, now getting the caps for my implants that Prolia took roots out two teeth. Thankfully, it ran into a titanium implant and could not get past it. Please report this new side effect with Amgen and do not ask them to comment on it. "I believe Prolia is 100% responsible for my leaking bladder". They are bound by law to report it to the governing body that regulates Drugs in your country. It may definitely be a new side effect. Have you tried any celeated(sp?) Magnesium for this problem? We well know Prolia attacks muscles as that is where calcium is in our bodies since we are unable to really store it. Usually it causes muscle pain and cramps. Hopes this helps a little. Be well~Pood

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Re: Lizzie (# 2390)

That is a new one on me. I wouldn't be surprised at anything. Prolia does affect the muscles. Perhaps the pelvic floor muscles ? I wish I had an answer.

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Is anyone experiencing urinary incontinence after taking Prolia? I have never had that problem and now am totally undone by incontinence after taking the shot.

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Re: Judy (# 2386)

Sherry here. First time communicating. 66 year old Caucasian normal height and weight female.
Had Prolia injection very end of Dec 2017. First and last Prolia injection.
Extra exhausted.
Extra stiff esp in AM
Concentration out the window
Eye vision worse
Sores now (similar appearances of dry warts) on back of L leg. Leg enormously and constantly itchy on back of L leg. Touch and press of back of L leg is not same as R leg. L leg feels like there are tiny marblelized jelly type tiny soft stones.
Headaches galore.

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Re: Sal (# 2387)

I guess you could call our chats "Me too Movement" # 2 !!

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Re: JenjiOz (# 2385)

It took me a while for my skin manifestations to resolve. My body had become inflamed and it needed to calm down.

I very much appreciate this group. Besides realizing that I am not alone, nor crazy; as you said, it helped me put my problems into prespective.

I am pretty much back to normal, except for some permanently enlarged joints.

I intend to stay connected to this group in order to share my story, and to offer hope.

Good health !

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Re: JenjiOz (# 2385)

Hi Jen, I live in Canada and had 3 injections before i stopped almost 2 years ago. I, too, have had on going skin related problems which are subsiding somewhat. However it was the sires in my mouth that were most bothersome. my mouth stung whenever I ate. I have spent so much money out of pocket seeing a oral specialist who has tried many drugs etc with me to no avail. I've lost a front tooth due to infection [WBC was high!] and last year i suffered a rotator cuff tear which I'm not sure was due to prolia except that my shoulder and back muscles were terribly painful up to the tear. I have contacted Amgen twice and all I got was"we've never had any complaints and I should calm down"! I've also called Health Canada who have documented my side effects but that's all. I even contacted a medical journalist re a possible investigative report on prolia but never heard back! It seems that there has been much more success in the US.

I can't help but agree with you that this chat line has been helpful and puts my own problems in perspective. Others have had it worse. I too, quite a few years ago was on Actonel and the only thing I noticed was the occasional bout of diarrhea. Now that I've broken my wrist I'm not sure what to do. Diet and exercise are my regimen at the moment.

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Re: Sal (# 2374)

If only we had fully understood all the ramifications of this wretched drug before we accepted it. I think I blithely assumed that, as I had almost never suffered side-effects, I would be safe. Wrong! Magical thinking. And stopping a six-monthly injection is a totally different proposition to ceasing or tapering off a daily pill.

I must say that finding this site has helped me immensely. It is so valuable to find so much information and support, but at the same time sad and sobering to discover that so many people have endured far worse 'adverse events' than I have. I really hope that everyone who posts has reported their experiences to the relevant authorities, e.g. FDA, TGA, in their own countries, as well as to Amgen. The weight of evidence has clearly piled up.

It's over four weeks since my year on Prolia - basically no improvement with my skin. No specific Actonel side effects noticed yet, but my skin is still allergic to everything and stings and itches every day. I wonder if this will ever go away?

I'll try very hard to use US spelling from now on to make everyone's lives easier!

Thanks so much Sal, Poodle, and everyone.

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Re: Marion (# 2383)

I wish I had your foresight to search Prolia before I agreed to taking this poison.

Good for you.

Now I advise anyone who mentions being advised to take Prolia to read
these comments first.

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Re: Giralda (# 2375)

Don't go anywhere near it...just read the comments from everyone else and be warned. I wish I had been able to access this site before I allowed myself to be bullied into Prolia by 3 different medicos.

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Re: Poodle (# 2379)

Thanks for the pep talk, Pood [as I type with one hand!]. An interesting comment I might add is that the oral surgeon who is doing my bone graft etc. was so completely aghast that I had even been put on prolia. She basically said it was a poison as did my daughter's periodontist. My daughter Lynn was told to be very wary of bone medications. Her periodontist had done a lot of reading and also contact with drug companies and says emphatically NO to these drugs if at all possible, specially Prolia as it still relatively new. As to your bone graft, oh dear, I hope some of the bone shifts.I do know that some of the graft does come out so ....? I had mine done 2 months ago but as there was so little of my own bone there, I now have to wait for the implant and then another wait for the crown! maybe in the US things are done differently. I have an amazing oral surgeon who I trust implicitly. She errs on the side of caution and does an amazing job. She has a dog in her office for those fearful of dental work and will let the dog sit in your lap! Moishe is its name.....Irish for sure!!!!

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Barbara (# 2378) --

Oh, thanks to people like you, and others spelling out the defects, as in effects, of prolia, I will never agree to this treatment. I have read so much negative side effects, I will not agree to this treatment.I am now being asked to take bone density tests, being almost 60. Having access to all these negative reactions, I know enough to say no! I will take my chances, and avoid prolia!

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Re: Giralda (# 2375)

I have stage three kidney disease and my dr. Said its a widely used drug among people with kidney issues. I took one shot of prolia and had many side effects, so I haven't taken anymore. Personally, I don't recommend it,as it hasn't even had a 10 yr. study. If I had done my research , I would have choosen not to take prolia. As far as I'm concerned we are being used as quinea pigs. I called Amegen (the manufacturer of this drug and they were unable to answer many of my questions. Not a good indication of how much they know about prolia. Good luck in whatever you decide .just do as much research as you can to educate yourself.

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