Prolia Side Effects (Page 132)

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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.

3159 Replies (158 Pages)

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2621

Re: Marginot (# 2620) Expand Referenced Message

I would be willing to bet that it is the Prolia, I had 7 shots and did not research the horrible side effects of this deadly drug, I trusted my doctor and was not give any info about the side effects. My dentist said that I was lucky not to have any tooth problems, but I have had many of the horrible side effects of this drug. The drug they call Prolia is denosumab, also marketed as Xgexa for bone cancer patients. I took it for osteopenia and wish I had never taken. Denosumab is a form of chemotherapy!! It was a horrible drug for me personally! I hope this is helpful to your wife, and hope she gets well soon. I tell everyone to be aware of Prolia. As I said, it has been an absolute nightmare for me, and not sure I will ever recover from Prolia side effects.

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2622

Re: Marginot (# 2620) Expand Referenced Message

Tooth and jaw issues are a known side effect of Prolia; plus a whole catalogue of disagreeable ( to put it mildly) side effects. I rue the day I stupidly agreed to take it.

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2623

Re: Marginot (# 2620) Expand Referenced Message

I too had a tooth abscess and infection which eventually led to losing a front tooth. I have now undergone a bone graft and am waiting for it to "take" before I have an implant. All of my side effects happened after the second and mainly after the third injection. I still suffer from mouth sores which make eating painful. It's a terrible drug which I wish I had been more informed before I took it. Fear does terrible things when your doctor insists that this drug is the only one that will help you!

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2624

I think I am experiencing problems from two years of taking it. Starting over a year ago, I noticed excess saliva coming up under my bottom lip. They try to say I have GERD but I do not. It's not like GERD with sore throat or cough or any stomach pain. It's ALL in my mouth. I got an infection in my mouth as well and was getting lesions on my tongue from time to time. My mouth gets a bit dry and usually though, it gets too much saliva in it. It can taste different ways, salty, yucky, and maybe what acid tastes like. sometimes I feel like I cannot swallow. No doctor can treat me. Their acid reflux pills do not work. I finally went to a neuro clinic . I was noticing also some imbalance, which is a less common side effect of Prolia. The neuro clinic says I am off balance. Finally, I have tendonitis now and my shoulder which was healing and feeling much better before I started Prolia is beginning to have more pain again. This is NOT normal and two doctors said something like this: "I have never heard your story."

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2625

Re: Andrea (# 2624) Expand Referenced Message

They always say that, yet here we all are. Even if they haven't heard a particular complaint, they shouldn't be so dismissive. Doctors are too willing to believe what the drug reps (read salespeople) tell them; look how many doctors believed the drug companies about the new opiates not being addictive. The takeaway is become an informed patient and don't be afraid to disagree.

As for your symptoms, I wish I could offer you more guidance. Do you have a dental school near you? Sometimes we get better answers in an academic setting. Wish I could wave a magic wand and make it go away.

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2626

Re: Andrea (# 2624) Expand Referenced Message

I have had recurring raging mouth infections-- herpes simplex1 (I think that is the name),,I thought I had a tooth infection.. there was pain and sores inside my mouth.This started about 3 weeks after the shot. Prior to taking Prolia, I had experienced one or two minor cold sores in my entire life.

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2627

Lizzie (# 2625) --

This is all sounding too familiar. It has been 2 years since I've been off Prolia and am still experiencing mouth sores and sensitivity to any food that is even remotely seasoned with spices( even salt to some degree). I've tried many over the counter products to no avail. I'd be interested to find out from you and others if you have had any success in helping this problem. I was also told it was a herpes problem. I had only experienced a few previous cold sores in my nose! Obviously even stopping Prolia has not stopped this problem .

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2628

Lizzie (# 2625) --

Yes, your experience is a bit different from mine though.Mine is mostly stupid saliva that I can basically suck up from an all too strange-feeling lower lip (it is almost numb or something) and I keep sucking it up to help myself swallow! But my symptoms vary and just keep changing on me day by day. I treated the sores with yeast infection pills but the saliva issue remains. Now the roof of my mouth is weird feeling. I have no real pain, just terrible annoyance . Like some horrible nuisance you cannot get rid of through the day, and it picks up speed at night. I chew lots of Xylitol gum now to absorb the feeling in my mouth. It helps a bit. I did read SOME less common side effects I have: a feeling like I am walking on a boat (my balance off, but not in a serious way yet) and occasional weird feelings at my right ankle and other places. I wish we could find lots of people with horrid mouth problems and get Prolia off the market. I feel it was pushed on me unncessarily. I am told to take it because as a breast cancer survivor, I have to take estrogen blocker and they tell me I have that precursor to osteoarthritis. Don't most older woman have that?? Why not tell me to just take lots of bone meal or bone broth or something? Why does everything have to be treated UNNATURALLY?? I am SO done with Prolia. Praying in three months I am normal again.

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2629

Andrea (# 2627) --

So sad what they did to you, without even having osteoporosis. I feel simultaneously sick to my stomach and like crying for you. Yes, I've lost my ability to taste pretty much - realize it slows when one is older, but suddenly? I don't think so. Yes, on right ankle. Me too. Now have symptoms of other autoimmune diseases. Too many battles.

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2630

Andrea (# 2627) --

Your expeience does sound horrible; At least the mouth infections I experienced come and go...with the good part being go....Hope things improve for you..

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2631

Judy (# 2626) --

Oh you make me feel scared that you have been off it so long and still have the problems!! I'm so sorry. I had four doctors look at me and just say "it must 'hidden' Acid reflux" or "you may have hidden yeast infection" (for the small white bumps but no white coating on my tongue) I took stuff to fight yeast infection which I think has helped. The antibiotic pill did not help. Maybe it could help with YOUR symptoms. The product is called Yeastonil and has cat's claw and other good natural things in it. I drink lemon water with honey to balance my PH levels in case I have acid in my mouth, but now I am wondering if it's the chemicals of Prolia I am tasting. I swish my mouth with coconut oil and gargle with salt water (salt actually seems to calm my mouth). I saw a neurologist at Neuro Clinic who said my balance was off and maybe he could help me with both that and the mouth thing. You could try a clinic like that. He was an HONEST doctor who said he would wait till Prolia was out of my system rather than treat me in the middle of my 4th injection. He said maybe I will get better and I am feeling hopeful that I AM getting better now. I recommend eating really healthy and taking supplements to boost the immune system. My friend gave me a bottle of nascent iodine which seems to be helping. Also try chewing Xylitol gum. It makes my mouth feel fresher. The doctors can't know how to treat us because this is all abnormal stuff. We are all floating on a life raft hoping for what help we can get. I hope you can get better!

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2632

Lizzie (# 2629) --

Lizzie, how long were you on it? Also I am curious how long Diana was on it. For her to still have side effects two years after going off is just crazy. I feel for you women. Glad that yours is not so bad any more! I am feeling hopeful for my future. Now I want to know: Is estrogen blocker eventually gonna do something to me???

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2633

Re: Marginot (# 2620) Expand Referenced Message

So sorry for you and the others here talking about this.

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2634

Andrea (# 2627) --

This is the first time I have read anything about excess saliva on this site. Not long after I had my first shot I was having to sleep with a handkerchief in my mouth just stretched across to soak up the saliva. The handkerchief was soaked in the morning. I also had jaw ache on the left side but my GP passed it off as neuralgia. I should have twigged then that there was more to it but I allowed myself to be bullied into 4 or 5 more shots. I made bad friends with 2 more GPs because of my insistence that my problems, including aching thighs, are caused by Prolia. The only person who agrees with me is the Physiotherapist. Thank you for posting.

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2635

Re: Judy (# 2627) Expand Referenced Message

My dentist gave me a prescription for Acyclovir which helped. You have to take it at the first time you feel the problem erupting. It does help get rid of the symptoms but does not prevent other outbreaks. I really believe this is a result of Prolia as this has not previously been a problem for me. I have only had one shot and that was 4 months ago. Will not get a second shot. Now beginning to experience severe pain in shoulder bones and oddly enough in toes. Fortunately it too goes away. I have been just using OTC Salon Pas which enables some movement which is painful but not excruciating.

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2636

Re: Lynne (# 3) Expand Referenced Message

Get off as quick as you can. This is a dangerous drug. Do your research on Prolia.

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2637

Re: Andrea (# 2632) Expand Referenced Message

I was on Prolia for 4 months when I posted re: the hair loss, mouth infections and bone pain. Am due for the next shot at the end of September but will not be taking it... so far have escaped the tooth problems reported on this site and still have hair.... so I am quitting while somewhat ahead. Will post results of the bone scan...

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2638

Re: Lizzie (# 2635) Expand Referenced Message

Regarding pain in shoulder and toes: It has been 19 months since my last shot; yet my toes and shoulders are still painful and even deformed. I suspect that arthritis was there, but Prolia caused it to manifest. Clearly, this is not going to resolve. P.s. my ankles too. This is a highly toxic drug and should not be prescribed so easily.

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2639

Re: Lizzie (# 2635) Expand Referenced Message

i certainly will mention it to my dentist. Unfortunately my mouth is continually sensitive whenever I eat. It's as if all the taste buds are ultra sensitive to any food that has any kind of seasoning. Even eating a crispy cookie irritates my mouth. All of this started after the 3rd injection of prolia. I guess I've just accepted that this is what I'll have to live with. I can only hope that anyone who contemplates using this drug gets a chance to read what many of us have had to deal with. My life has changed immensely. I've exhausted all avenues to find an answer to deal with this issue.

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2640

Judy (# 2638) --

There is such a thing as Glossodynia, otherwise known as burning mouth disease. There are steps you can take to manage it, but too many to mention here. You can find it in " Google University" as it is a bona fide medical condition.

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