Prolia Side Effects (Page 65)

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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I finally called them back today and told them at present I do not have sufficient people for you to take on this suit. Maybe after everyone thinks this over more, I may get more yes votes to give them a head count. I know a couple of you are saddened by the fact but a firm of attorneys that only litigates medicines and medical products needs people to join in the suit; otherwise, they don't have one. I did not contact them for me as I have no damages, but I did contact them on behalf of all of you. I did remind them that between 4,000 and 5000 people have died from this drug.

I am thrilled to see Canadian is alive. You had me very, very worried as you have been so quiet but no, they could not take someone from Canada. You would be a perfect one for any attorney. Maybe when everyone has time to think this over well you can still let me know and if we get sufficient people, I'll call them again. Pood

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Skitty~a 7% risk factor for a broken hip is about like a teenager. What are they doing? Trying to scare you into taking something you don't want or need. You are in a much higher percentage of just crossing the street and being killed or hurt by a car.

I think you found the numbers on some doctors writings about arthritis that also included osteoporosis - maybe Natl' Assn of Arthritis or some place like that. Does that sound familiar to you?

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C. Louise~how would they know if you didn't tell them? It's not like it's published in the paper or on the net.

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Skitty~go to your post number 1137. That is where you write it to 'healing tree'.
Be well~Pood

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Pood,
I asked more than 2 years ago about a class action lawsuit. I was writing on behalf of my sister who lives in Canada. I have been watching this site ever since and it appears to have become your personal chat room. If you really want people to participate in a class action law suite then it is the law firm we should be in contact with and not YOU. Clearly this is the reason you have had so few respond.
I do thank you for all your time and effort but you are neither a doctor nor a lawyer, Rick

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I had my Prolia 3 months ago. Prior to Prolia I took 2 months of oral Biophisponate first that cause severe acid reflux and bone/muscle pain- side effects were very uncomfortable. Drs encouraged me to do Prolia. Finally insyrance covered injections. I had stopped oral biophispunates for 2 months before taking Prolia- I have GI issues continuing. I have facial itching. I itch all over my body which changes. I have severe vaginal and rectal itching. I have deep bone and muscle pain and aching which moves around. I have had an uncontrolled cough for 8 weeks and now Just had a probable DX of copd. My mouth breaks out in sores. My scalp itches. I sweat at night. I am fatigued severely. I have a weird sensation of balance loss that feels visual when I move my head. My ears ring and buzz. My legs and feet cramp. My left rib cage hurts when I lay in my side. I am retaining water. I have had sinus infection. I have more headaches. My blood pressure has risen. My teeth feel weird. I feel increasingly anxious, I had rapid weight gain, from 115/18 to 125+ and increased 2 dress sizes in my back and in my jeans. My thighs look dimply and pitted- not like usual. I have had sores on my face. My body (small scratches/cuts) heal much more slowly. I am not feeling well at all. I have worsened insomnia. When I do fall asleep, itching, cramps or pain/aches wake me up. I am exhausted. I am so frustrated with myself for going along with this Prolia protocol. These last months have been a blurt of symptoms, pain, discomfort, doctor appointments , more medications and "things" going wrong. My immune system is overloaded. I am having some kind of adverse reaction to the Prolia. My family doctor said I should not take the next dose as side effects would likely be worse. My endocrinologist makes me feel as though I am overreacting to accepting my DX of Osteoperosis which is not true. I push myself to life my life each day. I do not look like myself. I do not feel like myself.

Thank you to others for Sharing their story, it helps to know I am not the only one reacting to this Prolia injection.

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Jan! That is awful! My dad was just like you. He didn't just suffer 1 side effect of Prolia, he suffered just about every one that is possible (that is listed as possible). I called the FDA again yesterday. I asked at what point a drug is taken off the market. That is my hope is that it will just be gone soon. Anyway, the FDA pharmacist said they do Post marketing (I don't know how that's done, I wonder how efficient THAT is ), but they also consider what is reported thru MedWatch on their website. Reporting side effects of any drug is only voluntary on the part of doctors and patients so we all know FDA doesn't have a true picture of what this drug or others is really doing to people. So please go to the FDA website and file a MedWatch Report. This is very helpful. Lay it all on the line to them. I'm trying to find the right person/department to get them to listen to me about changing the rules for side effects being reported by healthcare people. I want it to become mandatory that patients be monitored at particular intervals and that ALL side effects must be reported to the FDA rather than it being voluntary. So far, none of the State Representatives or Governor of Michigan will help me and they don't know who is in charge of this issue. The pharmacist at FDA told me yesterday to try someone in the US House of Rep or the US Senate so that will be my next search. You are truly miserable from Prolia. You will find at least mental support here on this site from the many others who are going thru the suffering or have had a family member who went/is going thru it. Please stay in touch on here as we will all be wondering EVERY day how you are doing. There is no reversal, no counteracting drug and the side effects are usually NOT gone in the 6 month time frame. But being on top of every change in your body and trying to get help with each side effect is the best you can do right now. Truly Sorry that your doctor did this to you.

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Wow! Jan~you are getting a lot of side effects from our poisonous Prolia. Your Dr. should put you on Prednisone for your skin. I know it's bad for bones but right now who cares!! As to your insomnia, you will need to get in with a Psychiatrist as they are the only ones that can Rx sufficient meds to keep you sound asleep all night. Have your dentist check your mouth, it could be fungal and if that is it, you get a mouthwash to cure it or it could be an infection. Some people here have had braces put on their teeth to keep them in place when they feel loose. Lastly, the pain from Prolia. You need to get in with a Pain Specialist who will give you pain meds to stop the pain from Prolia. Maybe you have a Dr. that doesn't mind writing those scripts but unfortunately, most do. You can have Vicodin and if that doesn't work you can change to Oxycodone as it has no carriers in it to damage other parts of your body. You have to get all these Docs on board helping you or you may not make it through the six months. Please make sure you are taking 1200mg of Calcium with Vitamin D twice a day and take Magnesium at night. Yes, Prolia does delete and totally mess up our immune system. You can have your regular Dr. check your immunoglobulins to see where you are low and give you some help in that area to help build it back up. You have to have the calcium because that is what Prolia LOVES to eat most. We are unable to store it in our bodies so it will go after the muscles to get what it wants and that causes severe cramping and pins and needles feelings around the mouth and down the arms. As to your ears, I don't know. Maybe someone else here with ear problems can help you with that one. I know you feel like you are not going to make it through this but you will. We all have and that's why we are here -- to find out how to get help and to know that you will come out of this alive. If you are lucky, the side effects will lessen to nothing in the 5th month and then you will have the end of Prolia. Often times it doesn't work that way as the Prolia goes 'poof' but the side effects keep lasting. Amgen, the manufacturer, has said up to 11 months and that's a downright lie! Just ask the ladies here. Get your Doctors lined up and get what you need to get through this nightmare. So very sorry you had that dam injection. I promise you will get through it. Did you receive a list of the side effects from Prolia? You can find most of them on Amgen's website under Prolia. They make a lot of meds so you have to go through a bunch of them to find Prolia and click on it. If possible, print it. Be well~Pood

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Rick~sorry you feel this way. For what specific reason(s) have you failed to start contacting attorneys to help everyone here. For what specific reason(s) are you not here answering every new person's questions and giving them hope and facts. My personal chatroom indeed!!!!! You really believe they should go through this Hell with no hope, no guidance, no knowledge and more specifically, what do you know about my qualifications. I have more letters after my name than you could ever believe!

I personally called this firm and asked them if they would consider this case. What have you done??? Bye~Pood

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Rick, at least we have someone like Pood, who is knowledgeable and has been through this hell herself, she can talk all she wants because I listen and so do a bunch of other ladies here. I for one am extremely glad I happened across this site, after Dr telling me that what I feel could not be from shot! While another Dr tells me he would never have given me this or all the other pills Fosamax and Boniva that eroded my esophagus. So unless you have something helpful to say don't judge.

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Thanks pood I found the post will repost later. It was at askapatient. I'm not feeling well and I'm on my phone so I will do it later. My doctor told me over 3% risk you should medicate wtf? LOL I agree I don't think my risk is that great right now because he told me right now or you were still very young but later it is going to be a problem then he said you to my aversion to medications he's referring me to someone else and he doesn't know what's up do about the hyperparathyroid situation he felt since my PGH one down it is OK now. But people who have this condition told me my calcium is fluctuating too much and that is a sign of hyperparathyroidism which could be involved in the osteoporosis. Will post more on this later for anyone else who has the situation going on sale. By the way I think you were doing a great job I am glad there was somebody here who cares enough to spend time informing people – Thank you so much.

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Jan, heartbreaking story. Now I know why my ears are ringing. Anyway stay close to a doctor who can watch you if you can find one. Have your calcium blood levels checked. Now I have an overload of calcium leaching from my body. They are talking about removing part of my parathyroid. Calcium builds bone so now that I have taken Prolia calcium can kill me aka hypercalcemia. I can only pray we will be well again. So sorry this happened to you.

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Pood, this is just not ending. Now post 13 months hypercalcemia and I have to stop all calcium and now having terrible night cramps. And ultimately if not controlled, death. If we do go to lawsuit and our doctors essentially are telling most of us that all we suffer is nonexistant or not associated with Prolia how do we stand a chance of winning. If there is any chance it will help stop this stuff or at least prompt some testing or taking a patients complete history before injecting, I will be up to standing with you and others in a lawsuit.

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Yeah... 7% doesn't seem like much huh? I have to read the statistics. He told me if it is above 3% you need to medicate??? lol.. something doesn't seem right. I need to medicate with these deathly drugs? Anyway, he told me calcitonin is no more, I wonder if this is really true? He isn't going to treat me so I have to find someone else and hope my endo does the other evaluations I need done to figure out if there is another cause for me. I have no faith anymore. But thank you so much to you Pood and to all of you for sharing your stories. I don't think I would have taken prolia but reading what you wrote confirmed my fears. He said now I am very young relatively so it's not a problem but later it will be- he said forteo wears off when you stop I think but I pointed out they all do except for biophosphinates. And what you get is old bone with new bone piles on top apparently.

He referred me to an endo who specializes in Osteoporosis. If I go, it's a hike, lets see what she says. I have to do another urine calcium because one was high and to me at least it isn't clear what is going on with my pth. I stopped vitamin D and calcium due to all of this- prolia causes elevations in pth levels and calcium issues that was one of the warnings added on. He said he has patients on it who are ok, I said great for them but if you have the deathly side effects it is a living hell if you survive it at all. He said when other drugs come out, I said I'm going ot wait for something safe, the side effects will be just as bad. I told him about prolia having 4,500 deaths reported since it was on the market with death being the highest adverse event reported. It's crazy.

By the way I found my post.. I can't find my email with the number but it was a different one than the one you mentioned. It as at: PROLIA Top Adverse Events & Effects based on FDA MedWatch Reports

I can't find this info at the FDA website but it must be there somewhere. I will email them and ask where the death toll is posted at their website in adverse events. I think there was a different graph at ask a patient than the ones visible now too.

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If people come here and read what others are going through they won't take it at all.

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Pood! Please tell all of us how a Class Action Suit works as far as are patient records retrieved? Is it revealed who gave the patient name or why the records are being requested? Are names of the people involved in the Class Action Suit published or are they kept confidential? I would just like to know. Never been involved in anything like that before so I have questions and I'm sure others on here have questions as well. Thank you for any information.

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Pood, I am sorry you responded with such hostility. I live in the U.S., my sister lives in Canada and she is the victim. This should have answered most of your hostile comments. I drove from S. Fl. to Toronto about a year ago and spent 5 weeks helping her after her hospital discharge with a sever blood infection. Her immune system is virtually non existent. She has or has had almost all the negative side effects - her weight ranges from 75 - 80 lbs. with most of her internal organs burnt including a Pancreatic breakdown........ It is past 2 years since her 4th shot of Prolia. My message was not intended to create hostility but to possibly shed some light on your poor response to the law suit. Thanks, Rick

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I did not do the infusion. That is once a year. I did the 6 month shot of Prolia after taking an oral RX for a few months. You are supposed to get the shot every 6 months for 2 years or more. I'm so glad I only did the bi-yearly injection and not the full year infusion all at once.

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Rick - I always appreciate Poodle from bottom of my heart that she really gave us helpful advices and encouragements. I did not write here recently as I felt very depress as the 6 months passed I am still fighting with the severe side effects. I feel very tired of talking about my side effects sometimes; but I still come here to get some hopes. Poodle thanks again!

Rick - how is your sister feeling now. Two years gone - my heart goes with her as I know her feeling. As for myself, I am suffering of an incomplete formoral fracture (my right tight bone). Still have problem with my Stomach. Leg muscle pains etc. Is your sister living in Toronto?

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Rich - I just saw your post again your sister live in Toronto. Where did she get her injection and any family doctors admitted the Side effects? I did not get much help from the family doctors here.

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