Prolia Side Effects (Page 99)
(Newest replies first)

I would like to know of any side effects others may have experienced after receiving Prolia infusions. Up to now I have none.

REPLY

REPORT

Diana~keep after the FDA. That's where I had the best luck and they are paying attention and putting all the labels on Prolia which had not previously been there. In fact, the lady I talked to told me and I quote: "If we get more like yours we will take it off the market". I have no idea what my magic words were that got their attention that way. I have posted on other threads here or maybe even here that we have an option that is kind of like lawyers and settlements and as I have written many times I know a guy in NC with the last name of Lamb. It's almost identical to reporting to the FDA via the net with a tiny form to fill out and they will consider it and let you know. I believe it is mandatory that the Docs give us Amgen's Dear Patient letter; however, when I showed it to mine she had never seen it before. She swore up and down on a million Bibles that she had never had a problem with Prolia until little old me who is very lucky to be alive. I called or emailed the FDA with every new side effect I got. What we need are Immunologists but where are they? They are the ones that can figure out how to get rid of all these horrible side effects. We are also supposed to have a calcium test before a Prolia injection and also approval from our dentist. I received neither. What about the rest of you? Go to Amgen's website and print the Dear Patient Letter and take it to your new Dr. and also all the side effects that Amgen has now admitted to and are on their website. MDs are all on computers in their offices. Tell them to go and look but it seems as if they have to be hand fed. Pood

REPLY

Was this helpful? 1

I think something - though my Primary is still in hot denial. I see a endocrinologis tomorrow morning. A bit worried - he has a reputation for attitude. I need to get everything read tonight - I was looking at a list of old symptoms after two weeks post shot. I still am suffering from nerves in neck, and had to pay over $1000 out of pocket for the Radiofrequency Ablation to kill the nerves in neck, will not know how long that lasts and I still am having flares of the bursitis in hip- but not as horrible as in the beginning when I couldn't walk, then couldn't walk for a long time without aid. I still used a cane occasionally. Someone has to listen who can do something!!! I know not everyone has side effects, but some of us have them so seriously our quality of life is pretty much down to bed and bathroom off and on. If the doctors won't believe us the manufacturers sure won't, even if they are on their side effects list. Maybe some class action lawsuits would be the answer. I don't know.

REPLY

Was this helpful? 2

Kitty! Oh yes!I started with my local representative, not their department so they referred me to the next level of govt. I called the governor's office, they said their department couldn't help either so I emailed the congress person that the governor's office told me would handle things like this. I didn't get a response, that was Debbie Stabenow's office, so I called her office. The secretary took all of my information and my concern and she said she would pass it on but she DID tell me I would not hear a response!!!!!!! Not until a bill would be passed. My concern was that it be made mandatory that all doctors and health care providers be made to check and document their findings of patients when they are prescribing harsh drugs such as Prolia. AND that it be mandatory that the doctors report any and all side effects that any drug is causing to any one of their patients. I also got the # for 2 different offices from the FDA who they told me would handle concerns like I had. I called those offices and it was like falling on deaf ears! Now all I can do is continue to tell every person I know in our small community. Luckily, I mentioned it in time to one of my neighbors who goes to the same doctor's office that my dad had gone to. (He died a year ago. Please read my previous posts). She's 54 years old and mentioned to me that her doctor wanted her to get "some" injection every 6 months "so she didn't get osteoporosis". I asked if it was Prolia. she said "yes". I told her about my dad and told her it would be good to do some research before taking it. After researching it on her own, she told me she will never take Prolia. Now she goes to a specialist 2 hours away as far as being doctored for osteoporosis and takes other treatment than Prolia. I don't know what that is but at least she is fine at this point. Don't worry, I'm spreading the word the best i can.

REPLY

Was this helpful? 2

I had it on my Facebook page saying don't take it and one friend asked what was it and all the others never paid any attention to it. Maybe I'm the only one with osteoporosis in my group of friends. Just a lot of you're in my thoughts and prayers and that's as far as it goes. Instead of Congress, maybe we should start complaining to the medical associations in this country, especially the Rheumatologists. More thoughts?

REPLY

Was this helpful? 1

C Louise: Wondering if you contacted your local congress person or senator? Did they respond? How are you now trying to spread the word about your experience?

Even thought FDA says only report once, still report! Your condition can change and side effects linger. They need to be updated. Sign up to receive update emails from FDA.

Wishing you all the best for a speedy recovery.

REPLY

Was this helpful? 1

I'm very sorry for u your loss. I
Hope you find some peace a find drug will be Off the market at some point.

Keep complaining and encouraging people to report events. I do the same with convenia- I warn people about it with flyers. That is all we can do at this point really. And it may be more helpful to warn people to refuse the drug, maybe by word of mouth we can spread the word of his dangerous it is.

REPLY

Was this helpful? 1

I just wonder where we can get it reviewed by a professional who can say if it's accurate?

I know Sheri the thing is the whole system is largely messed up and it corrupt do we have to do our own homework. I always read all side effects and look For bad reviews now with new drugs which seem suspicious to me. I lost one of my furbabues to convenia. The dvm gave no warning of the terrible effects which include death and this is typical- thru also deny in most cases that convenia caused the harm.

Fir the bone density they compare joy to a 30 year old on the T score and to a woman in the same age range on
The Z score I believe. ( I
may be mixing these up) But there is still an error range of 30% or more. IMO opinion we are all different though with varying bone density. And there no point comparing to a 30 yr old when you're 50 and up.

REPLY

Was this helpful? 1

Thanks Poodle,

I read an article about hgh and figured it out. I also read an article about stem cells increasing bone density in mice with osteoporosis. The stem cells had a more dramatic result. I hope that these two new treatments will help us. I'm still worried there could be side effects too though but I guess time will tell.

REPLY

Was this helpful? 1

It was the last warning that the FDA put on Prolia that Kitty found which I think was for the broken femur? (Canadian has it with only one injection) and I found out later it was a black box warning but had zero knowledge of what that meant until I was watching the national news and they mentioned and explained it. They will be putting it on all our pain meds now too as too many people are unable to follow instructions. Pood

REPLY

Was this helpful? 1

I also have read that the bone density test is inaccurate that it compares me for ex. 64 year old to a 30 yr old and if you are thin, which I am it should be read differently. I can't tell you how upset I am right now about what Pood found out

REPLY

Was this helpful? 1

Thanks Pood for all your knowledge as always, I can't believe that we were all hurt by the people who claim they want to help us

REPLY

Was this helpful? 1

Hi Poodle. thank you for that blip about the Black Box. Anything I hear that might be closer to the FDA figuring out that Prolia is deadly and it's time to get it off the market makes me happy. I'm just wondering where you saw or heard this? it's still a daily battle for me to deal with all the events that led my dad's doctor to give him this drug. I will NEVER get over it but if it gets pulled off the market it will mean that possibly all of my screaming to Amgen and the FDA might have had just an inkling in helping get it removed. I sent a Medwatch report again yesterday. They ask that we only send 1 report but I don't care. I bark at them every couple of weeks. Thanks for letting us know where you saw the BlackBox info. Have a Happy Day.

REPLY

Was this helpful? 2

Canadian~are you okay. You have not posted in a while and I'm worried about you. How's that thigh bone of yours doing? Hugs~Pood

REPLY

Was this helpful? 1

Skittie, HGH is human growth hormones and they are doing a small clinical trial with it for osteoporosis. Hope to heaven it works!! All natural. No sickness or problems. Just Mother Nature at her best. Pood

REPLY

Was this helpful? 1

Sheri~Yes, the Dr. I went to is very well known and quite famous. Other than the cataracts I have some eye problems but were definitely years before Prolia. I have to have them thoroughly checked every six months by a Retna Specialist. The other is a weird disease I came down with in about 2011 called 'spontaneous corneal ablation' meaning that a piece of my cornea can come off any time it wants to. There is zero they can do for it. That one hurts!!! I spent one whole day doing tests and then he did the surgery. Next day he checked it and I caught the first flight home. I know the cataract was from Prolia but nothing else in the eye department. Sorry, hon. Cannot help you more on that. Secondly, the cataract surgeon here also looked at the other Doctor's work as he had a stitch to remove. All he noticed was I am getting a secondary cataract there which he will laser when the time comes.

NOTICE TO ALL: Prolia got a black box warning. I thought that was just extra stuff for the Docs to not read as they don't really care. I found out from the national news that a 'black box warning' is a really big deal with the FDA and the product has to be beyond dangerous and Doctors should not be using it except in maybe a rare case where it would be the only thing on this Earth that could possibly help. Sorry to be so slow on that notice. So the next time the good Dr. wants to inject Prolia, please let him or her know that it has a black box warning on it from the FDA and that should stop it in its tracks. Pood

REPLY

Was this helpful? 1

Definitely, won't be until May, have to wait two years to date

REPLY

Was this helpful? 1

I am wondering about this too, if my bone density scan is accurate or not. As I said before a friend told me there is a 30% error rate and even more in petite women. I saw a rheumy and he said I do have osteoporosis too in the femoral neck of hip so I'm at highest risk for hip fracture. I forgot to ask him about accuracy of the scans. How do we get a review of that? He is doing a bunch of tests including retesting parathyroid tests and a 24 hr calcium u/a. I also want to do bone density factor testing to see what is going on with osteoblasts/osteoclasts. He did mention prolia at one point, not suggesting I take it, saying it retards deterioration of bone etc. vs calcitonin but I said no way I'm taking that or any of the biosphonates and he didn't press me on it at all. I said they are all not safe and have terrible side effects. I have to say though I don't feel safe taking any drug at all currently for Osteoporosis. I hope all the prunes I'm eating are doing some good.

REPLY

Was this helpful? 1

Good job Sheri! I've heard that some of the types of bone density scans that are still being done are not accurate. The ones used in our local hospital is one of the "outdated" type. Best of luck and will you report back once you have yours done and get your report, as to what Prolia did to your bones?

REPLY

Was this helpful? 1

The nurse from the office who gave me the prolia called again. Said she spoke to the Dr and when I come for yearly appointment I have to have bone density test. But guess what I am going to my GP , he told me he wants an unbiased facility to give Bone Density. He is the one who said he never would have given me the shot in the first place. If she gives me a hard time then I am switching doctors. She was all big on giving me all the poisons and when I asked her for help she said call your GP. So who am I going to trust. Not her ! Sheri

REPLY

Was this helpful? 2

What is HGH? I hope it's a good treatment without all these deathly side effects ??

REPLY

Was this helpful? 1

Would like to know if anyone had side effects from Prolia but they went away - and how long did it take for that to happ...

318 REPLIES

I had my infusion Mar 4 2015. I have experienced severe stomach pains, leg pains that wake me up at night, a horrible dr...

200 REPLIES

I developed a red burning itchy lumpy rash after one injection of Prolia. Mainly on face neck chest arms scalp. Anyone e...

34 REPLIES

I'm a 59 year old female, diagnosed with Behcet's Disease and I use Prednisone for treatment for my weekly flare...

7 REPLIES

I am 60 yrs old and suffer from osteoarthritis, osteoporosis, and myofascial pain syndrome. After discussing with my end...

85 REPLIES

I am 81 and had my first Prolia Shot May 7, 2015 and after three weeks I have developed a red rash looking sight UNDER t...

11 REPLIES

Aprox 2 weeks after the prolia injection I started to experience nausea and weight loss. Also, loss of appetite and a ke...

27 REPLIES

I am not going to have my next shot of Prolia due 11 June. I have already had two injections and lately have suffered ho...

128 REPLIES

I am a 57 year old female who has -2.5 bone density scores on hips and -3.4 in the spine. I used Forteo for 2 years, but...

15 REPLIES

What does the pharmaceutical people of Prolia advised regarding its side effects? ## Hello, Lala! How are you? They do w...

29 REPLIES