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Prolia Side Effects (Page 5)
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Alexis Says:
Would like to know of side effects after Prolia infusion from other persons. Up to now I have none.

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Joyce B Says:
Tina , not sure if oxygen chamber available in your area but my dentist told me this is only way to reverse effects of prolia . Its been 10 months since my second injection and I am just now starting to feel like myself again . Thank God horrible mouth pain is gone and I still have my teeth . Good Luck !

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Kathleen Says:
algaecal may be a good resource. Granted, they are promoting their own products but that does not mean the information they produce on osteoclasts and osteoblasts can not be verified. This info could provide a good starting point from which to dig deeper into the efficacy of this product.

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Reggie Says:
Hi Tina
That is awful, I've had my 3rd last month & must say I feel wonderful, after my 2nd had serious reactions etc, but managed to get prepared correctly for 3rd, increased calcium etc, diet etc etc, I feel fantastic just tired but not really putting too much into that as life is quite hectic for me right now! I do hope u will b ok, I've chronic osteoporosis, iv started to walk a little too, which I could not manage before! Reggie x

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Tina Says:
I am 44 and have taken 2 prolia injections for severe osteopenia and bone fx. Hx of breast cancer. I now have osteonecrosis of the jaw caused by Prolia. Teeth literally have just fallen out. Oral surgeons don't really know what to do because it takes at least a year before Prolia gets out of system. The whole right side sinus cavity is practically gone. They want to do bone grafts but no one will touch me until it does get out of my body. Evidently, the Prolia is blocking the red blood cells from getting to my jaw area. I still have no idea how all of this will work out. I'm a nurse for a physician who says the studies don't really even show any bone density improvement. DO NOT take this drug!

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Kathleen Says:
Guys - I do not remember where I read this. It was something about attaching to old bone cells which improves the density but the problem was that it also attaches to new bone cells, thus inhibiting their natural growth. I would double check that with my Doc and do my own research. I will try to find this info again. A lot of sights are trying to sell their products; I don't believe that was the case here. Hope this helps. I am new to this (recently diagnosed) so trying to read everything I can get my hands on and often find conflicting info which only serves to confuse the issue. If anyone has new or differing info I'm all ears.

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Summer Says:
Please tell me where you received the information of " Drug increases bone density, but with old bone cells"? Just wondering. Thank you

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Summer Says:
Check out FDA Prolia label update: As of June 2014 Sections Modified Warnings and Precautions

Musculoskeletal pain In post-marketing, experience, severe and occasionally incapacitating bone, joint and / or muscle pain has been reported in patients taking Prolia. The time of on set of symptoms varied from one day to several months after starting Prolia. Consider discontinuing use if severe symptoms develop.

Direct questions/negative reactions to Prolia to: Amgen Health at 1-877-562-4111 and report to FDA

Best to all

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Benny Says:
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The discussion between yourself and Kathleen has me somewhat concerned. Am I to understand that with my bone density at 27% and informed by my surgeon that it has the consistency of "moist drywall", that Prolia may, instead of building new bone mass, as I was led to believe, only serves to retain the old bone in order to appear to have greater density? If in fact this is the case, I'm in serious trouble. I was placed under the impression that it assisted in the production of new bone growth, so much so they've told me it would "out pace" the degeneration at the root of my rapid and fast paced decline. Can someone enlighten me as to whether or not I have understood this correctly?
With much appreciative gratitude,

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Kathleen Says:
And Anni - Prolia seems to NOT allow for new bone to be created. Thusly, your density may improve but it's all on old bone which in many cases gets more brittle by the day. I think the density tests show a false picture of what is really happening to our bones.

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Benny Says:
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Hey Summer, about a week has passed since the introduction of more electrolytes to my system. It has had a positive effect in battling the periods of confusion and subsequent migraines but thus far there hasn't been a complete reprieve from them entirely. They continue to be somewhat more than bothersome yet it wasn't until today that I've awaken in the midst of the confused state and actually had questions regarding my whereabouts. This was short lived but frightening none the less... I've added higher amounts of potassium and magnesium to my diet in hopes of fully counteracting these formidable side effects however that hasn't has enough time to be recognizable as any benefit. Again, I sincerely hope you are well and I'll be in from time to time with updates be they positive or otherwise.
Respectfully submitted,

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Petals Says:
Hi all, thanks to everyone who have shared their experiences and comments. I've found them really useful, particularly as I was nearly swayed by my endocrinologist to start using prolia. I was diagnosed with severe osteoporosis two years ago and recent scans show more deterioration. I also had a bone marker test (wasn't informed of its existence two years ago), and it too, showed a higher rate of leaching from my bones. But what to do? Following my early diagnosis, started taking calcium and vit d. This was a tough decision to make being a vegan. Neither of these seem to have had a positive impact on my bones. Has anyone found that bone deterioration has been halted or slowed down through diet, exercise or alternative remedies? Strontium isn't an option for me as blood clots is one of the possible side effects of that drug. Cheers. P.

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Benny Says:
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Good word Summer...
After being told by both Amgen and my Oncologist that the periods of confusion, severe migraines and lightheadedness I've suffered weren't caused by the Prolia, after pointing out precisely the page, paragraph and line stating clearly that these side effects indeed require immediate notification of the Dr's, I finally have verification and validation. I am one who some people believe go overboard on my water consumption, however, I enjoy water more than any other beverage and I daily consume three 64oz bottles of twice filtered Brita water. My PCP suggested last Thursday evening (7/24/14) that I replace one of those bottles throughout the day with a beverage high in electrolytes such as Pedialite, Gatorade's "G3 Recover", or similar equivalent. For the sake of finances we went with the powder form of the Gatorade and I have seen a most certain improvement over the last few days. Not a complete halt to these side effects at all but definite improvement. The confused periods are decreased significantly as are the severe headaches which encompass the entirety of the frontal quadrant of my head, spanning from just above the eyes to just in front of my ears and in a nearly straight line across the top of the skull. The lightheadedness has subsided accordingly as well but again, this isn't a complete remedy as I continue to have, though fewer, multiple periods daily when it all comes roaring back seemingly with a vengeance of sorts. Kudos to my PCP for the consideration and thought put in to at least give me as much relief as I've had from these debilitating side effects and in turn my hopes are, of course, that others may benefit from my experience. Perhaps given more time these horrid issues will pass completely but for now I'm grateful for the partial relief I've gotten. I'll continue to update as change necessitates, hopefully soon. Meanwhile, thank you Summer and all who may be following this particular issue, may my writing be of assistance to others and may God bless and in His mercy heal us all. Respectfully submitted, ...~Benny

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Kathleen Says:
I see a chiropractor 6 times a month. I am on a product called Osteo B Plus which includes 1000 mgs of calcium, also taking D (4,000 IU's) and walking 30 to 45 minutes daily. He now wants me to walk twice a day. Just diagnosed. We'll see what happens.

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Benny Says:
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Summer, finally able to write you with what may prove to be good news on the matter at hand.
It would seem that even though I consume a rather large amount of water daily my PCP has suggested that my electrolytes are diminished, adding that I should replace an amount of my water intake with Pedialite, a Gatorade, or like substance. I was advised to then give it a couple of days and if these symptoms continue to report to his office post haste. I'll update as necessary with either a pro or con regarding this remedy. May God bless all of you and thank you for this forum. ...~Benny

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PRN Says:
LDazzle, are you still out there? I am a 60 year old woman with Hasimoto's Tyroidosis and also diagnosed with osteopenia/osteoporosis and have taken one Prolia injection 7 months ago. I would like to hear how you are doing. I am physically extemely active, fit, and also taking calcium and vitamin D3, and magnesium. I plan to read "Your Bones" and "The Myth of Osteoporosis" ASAP.

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Benny Says:
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Summer, not only was I dismissed as unusual in my inquiry to Amogen (sp?), the Dr seemed irritated and dismissive to my wife's call through the service after hours this evening. I was warned of this by two professionals and it is indeed listed as a possible side effect in the paperwork I was given, so far as to recommend I call the physician day or night if it did in fact occur. The periods of confusion are becoming more frequent and are accompanied by incredible cluster migraines and light headedness as they retreat. Large amounts of acetomenaphen and entirely shutting out all forms of external stimuli seem to eleviate the headaches as well as the panic that ensues when these periods of confusion set in. At approximately 4:00pm today, I found myself unable to decipher the digits on my clock. Immediately I was overwhelmed by a fear I've not known prior to last Wednesday, 16 July when this began occurring.. Only by concentration was I able to gather myself enough to realize it for the period of confusion it was and then, one by one, ( i.e. , turning off the television, lights ) remove the external stimuli from the equation until the seeming panic was relieved yet unfortunately the light headedness and severe headache remained for sometime.
The most aggravating is the now denial this could be a related side effect when I have the data sheet stating it so as tangible proof in my very hands. Should this continue I will be seeking emergent assistance. I cannot continue to allow these periods, for lack a better term, go on without medical documentation... ~Benny

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Benny Says:
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Yes, yes, both the primary care physician and oncologist who administered the injection, as well as the manufacturer but I hey had me sounding as if I were not right in the head to begin with. No return calls yet from the Dr's, just awaiting those...

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Anni Says:
The scan shows an increase in bone because of the way Prolia works,

The bone density improvement is due to an accumulation of old bone cells not new.

You are just as likely to fracture on Prolia than if you never took it!

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Summer Says:
Benny: Did you call your doctor? Try to call Amgen Health 877-562-4111

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Benny Says:
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I am suffering great confusion after only four days. I'm now on day 7 and it has worsened substantially. I'm hoping to find some way of countering this disconcerting and quite disturbing effect as my body, so long being dysfunctional, has left me only the use of my cognitive skills that are now apparently slipping away from me in rapid order. Anyone?

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