Prolia Side Effects (Page 59) (Top voted first)
UpdatedI would like to know of any side effects others may have experienced after receiving Prolia infusions. Up to now I have none.
Re: Marion (# 2314)
The standard response seems to be:"No one has ever complained about that before". Either they are being paid off, or they simply don't listen. I referred my MD to this discussion group.
Ann (# 2317) --
You sound exactly like what happened to my dad! You don't live in Michigan by any chance do you? Dad died within 8 months of his 1 and only shot of Prolia! Declined within the first 2 days and got worse and worse day by day and never recovered. People need to be scared to death of taking this drug! Dad never had a broken bone in his life either until Prolia and then he had a fracture in his hip. They said it was from his fall 2 days after the shot. I don't believe them. Dad lost his balance within the 2 days. Was whirling, dizzy, pain and fell. But I think the Prolia caused the fracture due to how hard it attacks the bones as soon as it is injected. I'll always believe that. NO doctors would listen. They sloughed off "the great Prolia".
I would like to know myself as I have been diagnosed with Osteoporosis myself. Do they give you anything for pain? Right now my shoulder that was broken years ago feels like it’s gonna fall off!!
I had Prolia injections, and the side effects for me were horrible! Muscle aches, joint aches, pain all over my body, vertigo. My last shot was in 2015. Had the shots, trusted my oncologist and was given no info on side effects. After my last shot, I started to research Prolia and the side effects. I will never take another injection. I have reported it several times to the FDA, as I said for me personally the side effects have been horrible and I am still suffering from them, not sure my body will ever be the same. A horrible drug for my mild case of osteopenia! The same drug is given to bone cancer patients, and should be given for that only! I also have contacted Amgen the drug company that makes it and they have no answers for me pertaining to the horrible side effects. I hope this is helpful.
Re: Shirley (# 2334)
Hi Shirley, I am in with you, there should be a law suit against Amgen Drug, they make the horrible drug, Prolia. It has done quiet a number on a lot of us. Thanks for your post. The FDA is doing nothing.
Re: Maritere (# 2337)
It is true that Prolia brings out the worst in our DNA. Things we never, ever knew were lurking in our bodies because they were never causing us any problems. How it is able to do that, I don't really understand but it surely has something to do with T-cells and T-cell helpers along with the thyroid gland I would assume. Be well~
Re: Marion (# 2347)
Yes there has been but they are not on this site. Search through UK or Australia specifically and you will find them. I did so I know you can too. Here we seem to be mostly from the USA/Canada. Prolia is in every country in the world now. When I was first researching I found a large group of ladies in Australia with the exact same problems we are all or have all faced. Be well~
Re: Giralda (# 2345)
How about you tell your Dr. "Over My Dead Body" and that should end the discussion on Prolia. You already have some good sized medical problems. They don't need to be made larger, especially with a thyroid problem. A few women can tolerate Prolia but even when they do, it is not good bone, it's old bone on bone. Then, when you stop, your back fractures. The FDA has since put a warning black label on Prolia since it was first introduced into the USA. There are other drugs on the market. Prolia is a drug to be used ONLY when ALL others have FAILED. You are not mentioning using any others. When will our medical community figure this fact out! Be well~
Re: Marion (# 2347)
YES there are many, many, many in your country. It definitely is not just you.
Marion (# 2348) --
Hi Marion. The reply I sent to you a few days ago is lost in the ether. Sorry about the delay - perhaps a long weekend glitch or more likely because I posted after a big night out in Sydney. Thank goodness I can still even do a 'big night out' some of the time.
I'm in Australia, in SE NSW, and I have just experienced one of the worst years of my life, in my opinion due to Prolia. My GP and endocrinologist both say they have never had anyone complain of severe side-effects before me.
My most apparent issues have been multiple skin disorders - several kinds of rash, most of which itch or sting terribly, and/or look hideous. There have been other things - a basal cell carcinoma near my eye which took a very long time to heal, exacerbation of my pre-existing perennial rhinitis and rosacea, various unexplained pains, and allergic reactions to a variety of ordinary things that had previously never caused problems (my favourite jewellery, an ordinary local anaesthetic, etc). Also higher cholesterol levels. My iGe (immune system antibodies reading) is through the roof - normal x 13! I cannot find any other explanation for this.
My GP mentioned this to an Amgen rep, who sent Adverse Events forms for us both to fill in. I attached a detailed list of all the unusual health-related issues I have experienced in the past year (2 injections' worth, unfortunately). These, I believe, have been forwarded to the TGA.
I have just commenced weekly Actonel tablets, (2 so far), and my previous symptoms continue for now, although from time to time it seems they are tapering off. So far it seems to be 'two steps forward and one step back'.
It seems I have been very fortunate not to have been hit with the full range of side-effects in the way that many others seem to have been.
We feel somewhat isolated here, due to our relatively small population compared with North America, so the numbers are also low. BUT look up Prolia Adverse Events on the TGA website, if you haven't already, and you'll see that we're not alone. It's not as though this information is not available to prescribing practitioners either.
I wasn't happy about taking Actonel after this horrible experience, but I have read extensively about the 'rebound effect' which makes it very likely that we will be in a worse state than ever after discontinuing Prolia without replacing it with some other powerful drug. I was already aware of this possibility, but my sister, who lives in Switzerland, saw a TV program about this very issue, and she attached some articles from scholarly journals with supporting evidence. And now it seems that in the USA Prolia injections are labelled with the relevant warning.
I suppose neither of us knows personally anyone with similar issues, but we are out there!
Best wishes,
Jenny
Re: Marion (# 2362)
Please do not take another injection. It is poison to everyone.
Re: Ann (# 2361)
Same with my Dad! Never had a broken bone in his life until 4 days after that stupid shot! The prescribing doctor needed to be thrown in prison. Dad had 3 medical reasons that are warned to NOT take Prolia. My mom, dad nor brother would listen to me or read the articles I showed them before dad got the shot. They insisted that he get it because thats what the doctor said he needed. He was 81 years old and never had mention of osteoporosis or anything. The doctor just thought he needed it just because! $$$$$????? And my brothers wife is the office manager of the office where the prescribing doctor is so DON'T MAKE WAVES! Yes, they got mad at me for bringing up the articles and saying I didn't think dad should get the shot. So they secretly took him and got it. He got sick and was stumbling by 2 days after, fell and never recovered. All kinds of issues, new troubles almost daily. Died 8 months after getting it. The doctor had him on NO calcium and he ended up with heart issues. My mom was giving him a Tumms each day thinking that was enough calcium #1, it was the wrong kind of calcium and was doing him NO good. His levels got extremely low. Was in the hospital nonstop. I'm so angry to this day. And I always will be. NO ONE will listen. I wrote and called FDA, Amgen, etc. That was a joke in itsself.
Re: Marion (# 2362)
I caution against another inj. My thigh and jaw were unbearable also, and those were only two of my side effects.
This is a highly toxic drug. I regret the weak moment that I agreed to take it.
When I informed my Dr. that I declined any further injections, he was understanding, but painted a bleak picture for me. I will take my chances.
Life on Prolia is no life at all.
I have noticed in the ad, they are including more side effects now.
Perhaps because of the complaints??
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!!!!
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.
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.
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.
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.
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.
Re: Laura (# 2395)
I will answer on mine. Prolia ate the roots of two back teeth on the left side. I too had to have bone put in. The only thing that saved the remainder of my teeth was that Prolia ran into a titanium implant that it was unable to pass. That was the least of my problems. It also caused a cataract that I had to have removed and a new lens put in and had to go to a large city because the Dr. here did not want to even touch it. He did the after surgery part for me tho. The list gets very long when I write down all my side effects. I lost 68 pounds in 2 months that I could not afford to lose and I went to my Rheumatologist and she asked what was wrong with me and I replied you and your dam Prolia. She got busy really fast and teamed up with an immunologist. We all should have Immunologists because Prolia deletes the T-Cells and T-Cell helpers and that is the reason for all of the serious infections we get with Prolia. Hope this helps you. Be well~Pood
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