Prolia Side Effects (Page 128)

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: SYLVIA CRABBbird (# 2522)

I also had the mouth ulcers ( inside my mouth).. ongoing bouts ever since I took Prolia... never before.

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I, too, am still having bouts of mouth problems...stinging when I eat anything spicy, even salt can irritate. I'm curious to know what you do to help this problem. I've tried everything. The only things that soothes it are cold, like yogurt, ice cream, etc. I tried a herpes prescription but it upset my stomach, so I just live with it. No fun!

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Re: Judy (# 2542)

Same with me. Ice cream is my go to soother, but now I am gaining weight.
When J am home, I swish my mouth with coconut oil, then spit it out.

At night I use Xylitol discs.

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Re: sal (# 2539)

Thanks for sgaring your experience. I developed hyperthyroïdism after the first and only shot.... lost 20 pounds in 2 and a half weeks.... developed the ophtalmological disorder (Grave’s) and am now hospitalized while traveling in SouthAmerica because of optical nerve compression that left me nearly blind. All the health problems I have are due to Prolia and I only had one shot in March of 2017. Please note that AMGEN changes their info page on Prolia as they learn more FROM US, who never sigbed to be part if a clinical trial and ended up being their subjects in an experiment on this horrible drug.

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Marion (# 2541) --

No, I have been Hypothyroid for 20 years. The Hyperparathyroidism was secondary to the Hypocalcemia. Because of that, I had to take massive doses of Calcium; and that I relate to my Kidney stones. So, in directly my Kidney stones are related to Prolia.

It is interesting to read the new ads for Prolia.

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Judy (# 2543) --

Same for me. The most soothing thing I have found is ice cream, unfortunately it causing me to gain weight. Now, as much as I can, I swish Cocanut oil around in my mouth. At nighttime, I use Xylitol discs and I find that soothing.

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Re: sal (# 2546)

I can't thank you enough, Sal. I wasn't sure they were available in Canada but I finally found a place nearby (Walmarts!) that ordered some foe me. Hallelujah! Hope they work for me. I have been using Mi Paste in trays at night which is some help but also very pricey at $20 a tube. It also doesn't last through the night.
I'll keep you posted on how I find the xylitol discs!

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Judy (# 2547)

Good luck to you. I hope it is helpful.

Be well.

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Prolia is denosumab, a drug used to treat cancer! I was not told that is was a cancer fighting drug when I was given it for osteopenia. Seven shots of this form of Chemotherapy for a very mild case of osteopenia. It has been a nightmare for me, and I am battling the side effects of it right. My last shot was in 2015, and it is still in my body. Fighting nerve damage from this drug. Have to see a neurosurgeon because of prolia. I am still hoping for a lawsuit against Amgen. Although, the way I feel right, I may never live to see one against them. As I have stated so many times, FDA needs to become involved in this drug. A deadly drug!!

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Judy (# 2383) --

My doctor said none of his patents had side effects too. Well I do but he feels it's not from prolix but I'm sure it is. Every time I have gotten a shot my side effects are a little different and a little worse. I have had my last shot. I just pray there will be nothing worse before it's out of my system. I started with jaw pain but not constant and it got less as time passed until the next shot. Then I had extreme breathlessness but thankfully that went away after months of feeling horrible. But now I have pain in my lower back, hip and groin. I am praying it will go away as the others have. My doctor never told me and I didn't see anything about getting worse if I quit getting shots. Guess it will be a crap shoot when I quit. I think it is horrible that it is still on the market.

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Re: Lois (# 2550)

They all say that. I can't believe they are all on the take, but they just believe
whatever the Reps. tell them; just all those Dr's who prescribed addictive drugs because they believed the drug companies. I may have been just a low-key nurse, but I knew they were addictive. I digress, but my point is, they appear to blindly follow what big pharma says and ignore patients.
Have you seen the new Prolia ads? They are admitting to more side effects.

Your side effects are similar to mine, it took me a year to be relieved of most of them; some are permanent.

I wish you good health as you rid yourself of the toxins.

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Re: Lois (# 2550)

One more thing, be sure your calcium levels are checked, and don't let them talk you out of it. My levels were dangerously low and my complaints were blown off. I went out of state to a previous Dr. of mine and right away he ordered blood tests. I turned out to have dangerously low calcium. I was furious !

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Re: sal (# 2552)

I haven't had my calcium level checked yet but will do that, thank you. It didn't stop my hip and femur bones from getting worse. I am in the process of moving so I plan on going to a DO rather than a MD. They are more about diet and lifestyle rather than meds even though they are MD's.

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Re: Lois (# 2553)

Jaw pain and top of the thigh pain are common Prolia side effects. My first side effect was jaw pain, but I also had Hypocalcemia.
I agree about DO's.

Best wishes in your new home.

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Re: Lois (# 2550)

My doctor also said none of his patients had any side effects from Prolia. When I called about mine I was told they were definitely not related to Prolia. When I did my own research I discovered that Prolia had the same side effects on others. I don't feel the doctor had any ulterior motive... he probably was just not aware and perhaps no one else made the connection to Prolia and reported side effects to him. However, that does not lessen the discomfort. Amgen needs to step up and report the side effects to the public.

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Re: Lizzie (# 2555)

I don't see Prlolia doing anything about it. When I contacted Amgen Aust the woman I spoke with said that yes, my problems (aching Jaw and sore thighbones) can be adverse affects but that they were very rare...meaning that my problems could not possibly be caused by Prolia. Really ??

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Re: Lizzie (# 2555)

I agree that they don't all have an ulterior motive, but I do believe they are too willing to accept whatever Big Pharma says while discounting their patients. It is of utmost importance that the public become well informed and become our own advocates.

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I agree that some Drs need to be advocates for their patients. I waited for months and did research prolia but there are still information that I haven’t seen until lately. I would appreciate if I could find a Dr that would believe that I know my body and I know the health issues that I have had since I had my first shot are side effects of Prolia. I am months away from the end of this 6 month period but then I am done. My back has improved but my hips and legs are worse. What I would like to know is why this is the go to drug when even the companies recommendation say to use it if nothing else works?

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Re: Lois (# 2558)

That is a very good question, why is this the "go to" drug? Personally, I think all of these Osteo drugs are too toxic.

Dr.'s need to stop and listen to patients. It is doubtful that listening skills are taught in med school. I must say that I have noticed that the youngest ones seem to be more respectful of their patients. I recently attended a presentation by Dr. Atul Grande who stressed just that point, ask questions of patients and listen to them. It was heartening to see that there were medical students in attendance (all of them women!). All we can do is be proactive.

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sal (# 2549) --

Well, Sal. I have used the xylimelts for 3 nights now and, eureka, I think it's working! I did notice that, as the cautions say, it can be a mild laxative and it was, so I only used 1 last night and it seemed a bit better. I actually slept through most of the night without a drink of water!!!Now if only the sensitivity on the roof of my mouth would go away. I'm thinking that because I have to wear this darn "flipper" until I get an implant, it may be the culprit and is irritating my mouth. I had the bone graft Feb 1st but so far it's not ready for the implant. I see the oral surgeon again the end of August.

I must admit that finding this med-chat group has been a godsend. Finding others with the same side effects from prolia and how they have dealt with them is most encouraging and helpful. Especially knowing that others were told the same thing I was......that my problems were all in my mind and not caused by Prolia. Certainly phoning Amgen was futile when it came to asking for some answers or help. A waste of Amgens money hiring people to give such glib remarks!

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