Prolia Side Effects (Page 153) (Top voted first)

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: 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: 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: 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: 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: 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: 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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Andrea (# 2759) --

Andrea,
For your own sake, forget a magic cure. It doesn’t exist. I’ve learned to live with the side effects from prolia, followed traditional medical advise( with reservations by not taking any more drugs) and using the few natural solutions that seem to ease my symptoms. Hopefully some day they’ll all disappear. In the meantime, I pass on the message to all those who will listen , to question every drug prescribed to them as “the answer” to their perceived situation. We have to educate ourselves and take control of our own health and not think that it’s only MDs who have the answers.
Good luck in your venture!

!

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Judy (# 2760) --

Thanks, Judy. I kind of feel like maybe I am very slowly getting better. things are up and down. I think once the strange "moving" sensation goes away from me, I will be normal again and my mouth will go back to normal. Sometimes I can feel the skin lining of my lips growing back. Our mouth cells are always changing. I will be excited when I finally get back my layer of skin on my mouth that keeps me having to wear a mouth guard around my house! A doctor friend of mine told me 80 to 90% of the times, symptoms eventually go away. He was surprised by how long mine were lasting. But I have to be positive things will improve. I just feel bad for those who have even more serious issues like the breaking of jaw, teeth and bones. May God help us all.

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Andrea (# 2763) --

Andrea,
I am now convinced that even though prolia eventually leaves our system, the side effects we have because of being on it may have possibly stayed on in our system. The mouth problems I have are still with me even though I've been off prolia for more than 2 years.I had had 3 injections when I started having side effects that i noticed. They may not be as severe as they originally were but they are almost always present. I see the oral specialist again in a few weeks and maybe she"ll have a new "theory" on what exactly to fix it! At great expense I might add!

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JenjiOz (# 2761) --

Thank you for that information.... every little piece of knowledge helps.

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Re: Andrea (# 2768)

Wow Andrea,

You are quite a role model.

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JenjiOz (# 2769) --

Jennifer,
Your post has suddenly brought back the early days of my reactions to prolia. I had forgotten about my reaction not only in my mouth but I had skin rashes and an incredible sensitivity to wool. That has now abated but the mouth issue lingers off and on. For so long I couldn’t wear wool sweaters which, living through Canadian winters, was a real hardship! Thank heavens I am back in wool and knitting up a storm. I visit my oral specialist and will certainly mention it to her as it’s still the skin in my mouth that is affected!

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Re: Sal (# 2771)

Sal, thanks for sharing that. I enjoyed hearing "a number" like two years. Two years can go pretty fast, even when we don't want it to! Interestingly, I talked to a lady at a health store and asked her if she knew when I could expect to get better. She said, "How long did it TAKE you to get to the position you are now in? .... Well, then, how long do you think it will take to get normal?" I realize the process will be slow. At the same time, I am anxious to be normal again, so I am doing many other things to cleanse my body. Have you tried any body cleansing or detox methods? I am curious to know if others out there have employed such methods. I am going to be trying something this year. If I am successful at seeing results happening, I will let everyone know because right now, we need to be seeking WAYS to help ourselves be less miserable, and get results faster!! thanks for giving me hope by what you said about feeling better.

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Re: Sal (# 2769)

Thanks so much, Sal. The other day i got very angry as I felt Prolia swirling inside me. I shouted at it, "I'm going to GET YOU OUT. One way or the other, evil demon!" Maybe we have to visualize it like some people do when they visualize cancer as an enemy and focus on telling the body to FIGHT. We have to fight as best we can. It's so nice to find this place and hear the different stories. Not one person is affected exactly the same. I think with a combination of determination, positive attitude, and good health habits, we can somehow get it out of us. I feel so sorry for those who can't. My best to you, Sal.

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Re: Andrea (# 2775)

To han you, Andrea. My best wishes to you as you struggle to get better.
That is a good point, to visualize.
Be well.

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Re: Dawn (# 2778)

Dawn, I did not notice effects till after second injection but it was stuff not even related to the side effects they listed, so I did not put two and two together till my fourth. I sure wish I had realized what was going on before I did the fourth!! I think the fact you only did one is going to be to your benefit. Within a year, I bet you will be on the mend. I sure hope so; otherwise, I am doomed!! Good luck. I am sure you are going to get better . We all need to have faith.

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Re: JenjiOz (# 2770)

"Massive lethargy" is a good descriptive term. I essentially lost a year of my life to that lethargy. "Tired all the time" didn't quite explain the sensation that absolutely wilted my energy... I felt like a totally lazy person... doc thought I was depressed.. I was not depressed- just drained. After a year of no Prolia I am starting to bounce back little by little.

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Re: Dawn (# 2781)

My best wishes, may you recover quickly from your side effects.

It is criminal that this drug is still on the market.

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Re: Debbie (# 2783)

I would but live in Canada so not sure that would count. I am just like you but my symptoms came sooner. I am so afraid of what might happen next. I had a full blown allergic / adverse reaction and ended up with problems with my eyes and face. Had angioedema. Let me know if I can help in any way with the lawsuit as I am a nurse and have done lots of research. I am a legal nurse consult if that makes any difference and will be trying to see what I can do here in Canada.

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Re: Dawn (# 2785)

Unfortunately, here in the U.S. it is profits before people, so I don’t see a lawsuit happening.

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