PROLIA PAIN

I had a Prolia injection in September 2001 and developed pain afterwards. I thought it was osteoarthritis pain and limped around on a cane. September 2012 I had my second shot and then the pain really increased. I went to PT 3 times and the pain is now horrible. My left hip, thigh and knee hurt me 24/7. Yesterday I had an MRI to see why I have such pain. Waiting results. Meanwhile I can hardly walk, need help with my socks, struggle to get in and out of my car, cant do housework and cant sleep.
Now the Prolia commercials say "extreme thigh pain is serious as bone fractures have occurred"
Be Ware!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

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First injection was 2011, not 2001

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Hi Hurtingtoomuch,
That was the reason I declined the second injection, burning leg pain, swelling and peeling. Concerned the second injection would make it worse. All of the Prolia side effects started about 3 months after the injection March 2011 and subsided about 18 months later. Now after 2 years back to normal. My Rheumy did not recognize those side effects as Prolia side effects, wanted me to have the second injection.
Never give up and keep moving, activity was the biggest help.

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Side effects of drugs are rare. I scan about a half dozen patients a week on Prolia and only one or two a month have ever complained of any side effect and those were only mild bone aches for a few days, like having a mild case of the flu. They knew that was a potential effect, and it apparently wasn't severe enough to prevent them from getting a second, third, or now some are on their fourth injections.
But severe side effects are possible, and can be severe. You did right to have it further investigated your pain with an MRI. It may or may not be related to the Prolia, but we will be interested in learning the results as well, if you are willing to share them.
That is the nature of risk. Most of us go to work every day, driving our cars and not a single accident. But every day a few dozen people die in a car accident, or as a result of injuries from the air-bags that are supposed to protect us in a crash. Do we demand that air-bags we removed from vehicles because they can be deadly?

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In my small world I know of 2 other women (friends) that had Prolia and both had severe side effects, I do not agree that the side effects are rare. But I envy those that have had no side effects. My side effects were much more than aches or flu like symptoms and the same for M and D.
M had a persistent cellulitis that needed surgery twice and such severe bone pain she was in agony, her Doctor recognized the side effects. Also both of us had swollen legs, my legs peeled non stop.

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Thank you for your input. I am so glad to hear that your pain eventually started to subside. I can't wait for the day mine does. At night my left leg either aches like a toothache or it burns and throbs. My pain is in my left hip, my thigh, my knee and in my right foot.
The only pain that I have had that was worse was 4 broken bones in my back for which I had Kyphoplasty (special cement in the bone). And, yes I experienced childbirth once.
Still haven't heard results of MRI, but will post later.

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Interesting that you mention cellulites. I was at the dermatologist today wondering if that was what was causing the redness on my lower legs. My doctor wasn't sure; suggested I use compression stockings.

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Hi lannw,
My Rheumy had no idea why my legs were warm, red, swollen, and tender. I wear compression hose and have worn them since 2008 since having blood clots.
Even with the compression hose my legs after Prolia became warm, red, swollen, and tender. Very uncomfortable along with the peeling in sheets of skin.
Oops it is a listed Prolia side effect.

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I know dx is a scan tech and I'm sure his experiences are reliably retold and I am equally sure that this forum probably attracts those for whom the side effects of conventional approaches were not worth further treatment.
So my question is, does anyone know of a site where clinical trials are listed that include the numbers partaking in the trial and the percentage with each side effect?
What would be even better if those who have partaken in trials would be willing to share their names and experiences from their own perspectives.
Anyone know if anything like that we could research online? I want the original source not an analysis of the results.
Thanks
Maureen

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dxaguru, I'm not sure you understand how debilitating the side effects can be. I also wonder how seriously the "medical" community takes the reports of side effects. Having experienced my own Prolia hell, and ended up with a worse quality of life than the drug was supposed to prevent, I think it is a little cavalier for you to dismiss those who are actually living with the side effects. If I had known that I would lose 3 months of my life to infections and would have to cancel my family visiting because I had to spend Christmas in the hospital, I would NOT have had the shot. The fact that others have also experienced side effects that may be discounted by their doctors is important information. While the medical community is knowledgeable, I do not know anyone who knows it all. Sharing information is the best way for all of us to learn and dismissing others is not helpful. Maybe through these types of posts we can figure out why Prolia works for some and why it appears so harmful to others.

Twice as many of the mulitple myeloma patients on Prolia died during the trials so the trial was halted, but as far as I know, they never figured out WHY before allowing its use to treat osteoperosis. http://www.myelomabeacon.com/news/2010/11/19/xgeva-denosumab-prolia-receive s-fda-approval-for-bone-disease-in-solid-tumors-but-not-multiple-myeloma/ The suppression of the immune system is likely involved, but there is also a multi-billion annual sales projection that would make the risk to profit ratio slightly skewed.

Your analagy is also requires a bit of fine tuning. If we knew a certain type of airbags in certain vehicle types were causing a higher number of deaths, we would certainly have them removed. Some drugs are safe, but that does not mean that all drugs, especially relatively new ones are good for all patients.

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dxaguru, let's say you buy a new car. The salesman says this is the best (and safest) car you can find. However, the manufacturer knows that really there's one small defect that won't likely cause anyone trouble. But somehow this defect causes you to have an accident even though you are a careful driver. Wouldn't you be angry especially since you weren't told of this possiblity.
My doctor didn't tell me about any of the side effects possible with Prolia. He said it was so safe he was having his mother use it. Hope she had better luck than I did.

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