Prolia Side Effects (Page 21)
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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: Andrea (# 2756)

I have also had that feeling but could not explain it. Unfortunately there is nothing that can get this poison out of our bodies.

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Re: Lizzie (# 2753)

Lizzie, tell me more about the floating or cruise ship feeling, and I want to know if you feel something weird swirling inside your body or kind of pushing you or something. Very odd.

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Re: Lizzie (# 2753)

Lizzie, do you feel like this "floating sensation" is also some weird thing swirling inside your body, even when you are just lying down at rest. Something that comes and goes? I have been calling it the "Prolia surge" because when it is strong, my mouth condition seems to worsen!! (If I try to dance, it is very weird, as if I am dancing against myself) I think Prolia changed my body chemistry somehow. I feel a wispy feeling when I touch my face! I feel like prolia is trapped in my body and doing a real number on my mouth .Have been doing cleanses, eating really good veggies to cleanse myself, even taking activated charcoal, lots of fiber and water. Does anybody out there have this weird sensation? And is there any product to remove a toxin like Prolia from the body?

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Re: Judy (# 2742)

Judy, my reactions to food are different from yours. So I appreciate your suggestions but since we have different symptoms, maybe those things would do nothing for me. I can enjoy food, but all day long I am having to suck back a horrible sensation which is caused by not having an extra lining on my lips. It's now spread through the lower half of my mouth. It began as excess saliva and sores on my tongue. It changed into what I have today. Maybe eventually it will all cease. I have no clue. I've seen eight doctors and none of them have suggestions for me as your doctor gave to you. What kind of doctor did you see? I have seen alternative doctors because the oncologist who put me on Prolia unnecessarily won't even admit my condition is related to Prolia.

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Re: Dawn (# 2754)

Be careful about having dental work. I am sure there are plenty of people on this chat group who can advise you.

At one point I needed dental work and my dentist insisted on clearance from the Endocrinologist before starting the work.

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Re: Sal (# 2752)

I agree with your post. I had an endocrinologist prescribe this poison and the only side effect she mentioned was osteonecrosis of the jaw and stated that it is nothing to worry about and the dentists are making a big thing out of nothing. Well currently I do not have it thank god but am afraid for the future as I have been only 2 months post injection and have had different side effects every week.

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Re: Andrea (# 2741)

Thank you so much for mentioning the "cruise ship" feeling. I also often feel "off" when walking, but it is not vertigo. I could never describe it and it happened after the Prolia shot. I never connected the two.

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Re: Judy (# 2729)

You are correct. There are people who suffer no ill effects, Perhaps it is luck, or perhaps some metabolic factors that cause the rest of us to suffer.

I do believe that there are cases when it is appropriate, but those cases are few compared with the number of people prescribed. I believe there should be a criteria for prescribing, also, there should be a limit on which medical specialty should be allowed to prescribe. Thieve are powerful, potent metabolic drugs; I am concerned that any specialist can prescribed. Endocrinology should be the primary specialist, perhaps Rheumatology. I don’t see these criteria ever happening because that would severely limit profits. I don’t know where you live, but here in the U.S., our health care is a profit based system.

When I refused any more Prolia, I was told that I would be back in a year needing it again.
Well, guess what, according me o my labs, I am not losing any more bone !!
My bone density is not due until next January. I am not worried about it, since I believe that is a scam. Comparing the density of a 70 year old to a 30 year old, ridiculous.
Do 30 year old have grey hair and wrinkles? Who designed this test anyway ?
I wonder if it was Big Pharma.

2 years after Prolia, I still have ill effects of pain in my feet and ankles, especially my toes.
It seemed like overnight they became painful and severely misshapen. Probably I did have arthritis, but to go so quickly ? Especially my toes, they are full of knobs.
The other issues I had was Thyroid. My Thyroid was the other issue that took two years post Prolia to resolve. It took going Gluten free to heal my Thyroid.
Initially, I developed a severe HypoCalcemia and Hyperparathyroidism. 3 doctors blew me off, including the Endocrinologist who prescribed it. I went out state to a previous doctor who immediately diagnosed me. This is why I tell everyone to be vigilant and advocate for themselves.

Sorry for the long note, but I feel passionate about this.

I have made it my business to spread the word, not just about Prolia, but all the other Osteo drugs.

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sal (# 2749) --

Sal, after all these years on this chat site and spreading the word to friends, etc, something has to help others considering prolia. I have a friend who’s been on it for years with no ill effects. Maybe we all get a spiel from our doctors that it’s safe and is the only answer for our fragile bones. Mind you, it was a gynaecologist who prescribed it to me! By the way, so far, my bones at almost 78 years, are doing very well. I eat a high calcium diet, vitamin D and exercise.

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Dawn (# 2747) --

Yet they deny it, and have convinced the doctors

This is like the opioid epidemic where
doctors bought the line that the drugs were safe.

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Re: Sal (# 2731)

That is how they got Prolia approved also. Through something called creeping. They are only concerned about how much money they will make.

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Andrea (# 2738) --

I cannot believe all the people hat have had these reactions. My mouth feels terrible too and of course my eyes. I will certainly let you know when I speak with the lawyer.

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Duckbill (# 2744) --

OMG, I am so sorry. I had four of those injections so I guess this means I am fated to endure my problems until my death. What horror they have put on us.

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Re: Dawn (# 2737)

So sorry for all that happened to you.. I wish I knew what we could all do about this. We deserve something for what we are enduring!!

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Had my one and only injection in August, 2011, almost 8 years ago. I’m in pain every day. I didn’t do my homework. Never, never never take it. Teeth,legs, face, mouth, u. Amen it.

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sal (# 2742) --

Yes, I have! Every night. I also was using something I got from the oral specialist called mi paste. Unfortunately it’s not available in the stores here( Canada) and I pay $20 a tube! I think it’s available online. I liked it as I find that the flavour I get is not mint which tends to sting my mouth.

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Judy (# 2741) --

Have you tried Xylimelts ?

They have been a lifesaver for me.

They are tablets that stick on the gums.
I also use a night guard, and it does not interfere with them.

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Andrea (# 2740) --

Andrea,,
Your symptoms sound very similar to mine. I have to put aquaphor ointment on my lips every night. I too, wear a night guard. Food stings my mouth so I love to eat anything cold like ice cream, yogurt, applesauce , etc. I’ve seen a dental specialist who has tried everything, done blood tests to no avail! At the moment she has suggested Alpha Lipoic Acid ( sundown naturals) 600 mg daily. I have been taking it for 3 months now and either it’s a coincidence but my mouth is feeling better....not perfect but not quite so bad. I also put biotene gel on my mouth guard at night to help dry mouth. Good luck with any cure your Dr suggests.

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Re: Mometter (# 4)

I have had four injections. Last one a year ago. I never went back for the fifth. After injection two I started feeling a weird thing in my mouth. After injection 3, it was getting bad. After injection four, sores appeared on my tongue and no doctor would tell me what I had or how to cure it. I finally figured it out for myself. It had to be the prolia because after injection 4, a strange swirling sensation also appeared inside my body. It's been with me ever since. I am half a year off Prolia but I have no lining on my lips (my mouth feels like a sponge) and I always have a horrible sensation on my lips and in my entire mouth now. It gets really bad the second half of the day. So I wear a mouth guard at my house. Keeping my lips separated helps me not to "feel" it. I researched and there is no condition online that fits the description but I managed to find a website that discussed how those on chemo can lose the lining of their lips. I have lost the lining of my lips. I used to bite my lips but now there is no skin there to bite. I am wondering how long this can go on. They say Prolia is not chemo, but in my opinion it is as STRONG as a chemo drug. Otherwise, how do I have this strange condition? There is no explanation. I got many blood tests and nobody can offer me any explanations. Meanwhile, I feel like something is swirling inside my body. I can live with that, but I do not like it! I feel sometimes like I am walking on a cruise ship! And it's not a balance issue. I have good balance and do not have the symptoms i have read about associated with vertigo. Read what everyone is saying here. Everyone is different. I have only found one person who had my reaction to Prolia. Others are having other horrible reactions! Too bad they don't do statistics on all of us and find out our different ailments.

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Re: Dawn (# 2737)

I’m so sorry to hear of your problems. Your problems sound similar to mine except that the worst for me has been the sores and discomfort in my mouth. It has been about 4 years ago that I had the 1st of 3 injections. It wasn’t until a friend suggested it could be prolia as the doctor( an obgyn!.) had said she’d never had a patient experience any side effects! I eventually lost a front tooth due to infection. If you read the warnings( I didn’t nor did my Dr point out) . It took 2 more years of dental bone grafts and an implant that I finally have a tooth. All I can say is stop prolia now and tell all your friends, neighbours, etc to avoid it like the plague. I ,too , am Canadian and have tried to contact journalists to investigate others with side effects. Good luck.

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