Prolia Side Effects (Page 43) (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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It reads like yours was like mine. In the 5th month I got better and at the 6th close to 100% well. My hair still falls out some and I will need more dry needling after I can get out of the house but those are my only complaints now when I had just about everything Prolia had to offer and some they never heard of before. At least I can have real food again and that in itself is a blessing. Yes everyone - Prolia has a twin called Xgeva. Xgeva is for bone cancer. It just contains more of the active ingredient than our Prolia does. My Dr. pretty much uses biologics and she said that Prolia is only a number one compared to the rest of them. She also works in concert with an Immunologist for those patients. If this is only a 1, I'd die for sure with a 5, let alone a 10. I don't believe I have stated on this thread that Prolia is made from the ovaries of Chinese Hamsters. Amgen also sent mice into outer space to find out the effects of that with them on Prolia. I fail to understand the WHY! Also, a man named Mike at Amgen told me they are doing a 10 year study of Prolia. I wonder, really wonder, are we the ones in that study. This is why I encourage everyone to report every side effect from Prolia to Amgen and the FDA (or whatever Canada has too). Have them written out so you don't forget anything. Call every time a new one comes up. Call and keep calling. It will take a lot of effort on our part to get this off the market and it is now everywhere in the world. I know for sure people in Australia are complaining a lot. They have their own Forum that I wandered into one day. And, most importantly, reject the second inj. I had a broken back with 4 breaks in my hips. That was zero compared to Prolia. Had to remain in bed for 6 weeks. Big deal. I specifically talked to my surgeon for my hip replacement about having osteoporosis. He replied: No problem. We will just use lots more glue. Also found my last bone scan when I was on Calcitonin-Salmon. It did have improvement, just not huge improvement so I'm going back on it. Perhaps slow and steady wins the race. I know for a fact it saved my Mother. She took it until she died of old age at 96. No more broken bones even when she fell. Maybe this will give some more info that seems to be lacking on Prolia. Call Amgen and ask them to send you the packing info for the Drs and us. Then you will know for sure it's Prolia and also ask them to send you the "Dear Patient' Letter" that we never get. We are being let down by our own MDs. How many here had a pre-Prolia blood test and dental clearance??? Make them stand accountable and demand help. I had caught a diarrhea bug that was going around. After I didn't get well in 3 days my GP decided to send me to specialists -- never taking into account that my immune system was hardly working. Finally it killed the bug before I had the appointment with the specialists. This is what we have now called a MD. Thank Goodness for this place where we can freely discuss what's going on with us. And, Canadian, I was on 500mg Magnesium when I felt crampy…not every day, just when a big muscle cramp would come and hit me like a thunderbolt. Hopefully you can start your calcium and vitamin D soon. I fail to understand the reason for taking you off of it when Amgen states we have to have it. If Prolia does not get the calcium it wants, it will rob it from a muscle and that is the reason for the cramps. The human body is unable to store calcium in any other way. You may need to explain basic biology to your Doctor. Be well all and have a healthy New Year~

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I just want to take a minute to thank every person who might still be on this site from time to time for contacting the FDA or Amgen and reporting your concerns, complaints, side effects, etc. The FDA has required many changes in the labeling and literature in this nasty drug Prolia during 2015. Almost monthly changes so I think we're getting through to them just a little bit. Please keep contacting them. I would love to see this drug pulled off the market. I have yet to see ANYONE who had had help with their bones from this drug if that's the reason they were put on Prolia! You can correct me if you know of anyone. And I know some people said Amgen is now telling them it will take 10 years! I'm not sure how Amgen knows that unless their evaluations started over 10 years ago (and I don't know how we know that) because Prolia has only been on the market for about 5 years! I'm working to get it to be mandatory that health care providers must check their patient weekly for side effects when being put on this awful drug of Prolia. It is sooo important to have blood calcium levels closely monitored while being on this drug which my dad's were NEVER checked by his prescribing doctor when my mom would take him for appts. It only got checked by a doctor in the hospital months after being on Prolia and only because I insisted. At that point they were about ready to put dad on life support as he couldn't breath, they thought he was having a heart attack, and many other issues. His labs came back showing very low blood calcium levels so they started IVs to correct it and within 2 hours he began to improve. His calcium levels were never checked again after that and he continued to go downhill with the same issues plus additional side effects. So very sad. My dad was miserable from day #2 of being on Prolia. Just please keep contacting the FDA and Amgen. You are appreciated more than you know! If this drug was helping people it would be a different story but I see it doing more harm than good.

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I would like to know how long it will take for the body to get rid of Prolia. My siter is 83 years old, had 1st Prolia and hd mild side effects,2nd Prolia she said never felt this worse in her life....she had to be ospitalized, 3 weeks and tests came all good, doctors said it is strss! My sister doesn't know what to do anymore, one day she fees better other days her blood pressure goes up, she has to stay in bed feels dizz confuse agitations rapid heart beat.Doctor doesn't explain why she feels this way.she lives in Australia,she askes me if I could find out if the body will get rid of this awful medicine! She is afraid the medicine hurts the liver and kidney! Are other with the same simptoms? Please help my sister Thank you Fiorina.

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Hi Kitty! I hope I can help you find the labeling changes. Go to FDA.gov then click on the "Drugs" tab along the top where all the tabs are then on the right hand side under spotlight click on "search drugs @ FDA" (the second item). This will take you to a new page and in the search box type in Prolia and push submit. This will take you to another page, it should say "drug details", scroll down just a bit and click on label if that's what you would like to see. Then scroll down and you will be able to see all the dates of label changes. Click on the word "Label" in the box over towards the right hand side on the date you would like to see (dates are on the left hand side of the chart). You will then have to scroll down to page 2 of the label information and on the left column you will see "Recent Major Changes". This is where it lists what was changed on that particular date. I hope this helps. If not, please let me know, I'll try to help more. On the "drug detail" page (if you choose to go back there) you can also click on Letters, REMS, etc and see other information as well. Prolia and Xgeva are listed together as they are both considered denosumab. Good luck. You can call FDA and get to one of their pharmacists also if you ever have questions. I've actually had pretty good luck in speaking with them.

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F~I have never heard of anyone yet to have kidney/kidney dialysis or liver problems from Prolia. If a previous kidney/kidney dialysis problem were known, the Dr. should not have given her Prolia. It is contraindicated. Heart problems - yes, immune problems - YES, bladder infection - YES. There is a group of ladies in Australia that have their own forum on Prolia but I don't remember what it was. They are as unhappy as we in North America are with it. You can go to Amgen.com and copy the label that comes in the packaging, also they have the 'Dear Patient' Letter that none of us got and they list most of the side effects. We know there are more but they are not listing them yet. If I were you, I would call Amgen on the phone (it's listed on their website) and ask them straight out about the kidney because there has to be some kind of a relationship between Prolia and the kidneys or they would not want people with kidney problems to take it. Perhaps that is one pathway by which Prolia leaves the human body?? MD's don't seem to know the answer to this question and I'm not sure that Amgen does either.

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It seems from looking at the FDA website re: Prolia there can be liver issues with it. It's the first time I have seen it mentioned anywhere on the whole net. I hope it's very very rare!! Pood

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Anne~Your Dr. can give you a script for an over-the-counter laxative, brand name is MiraLax. Do not take as much as it says. Start small and find what works well for you. I also noticed when I was in the hospital getting my new hip their Colace really works while the one we get over-the-counter does about zero. I'm glad you are almost out of this horrid tunnel of Prolia. The Pred will work wonders for you. My hair is just now recovering. I've been very careful with it. No coloring, etc. This is now a couple of months past the 'magic' day when Prolia is supposed to go 'poof'. I also just was playing on line and there are lawyers looking for Prolia and Xgeva victims. All I did was enter it in Google and up came a page of them. Somehow, someway, they know we have been harmed.

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I had my first shot of prolia in April of 15, then the second in Nov of 15. I have been hospitalized for severe pain of the abdomen, back and low blood pressure. They released me stating they could not find any cause. I have asked my doctors about the injections but told my bones are so thin we have no other choice. There are days my hips ache and hurt so bad I cannot place weight on them. I suffer from nausea and joint pain some days so bad I am unable to get out of bed. I am now trying the gluten free diet, as I have read that this may help with the injections. I take extra vitamin D and B 12 as prescribed by my doctor. I was told in November they will do another bone scan this spring and if no improvement to bones have occurred they will send me to another specialist to see what could the heart of my problem. I am only 47 and have broken several bones and worry about the state of having such fragile bones or I would not take the injections.

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Rrdulworth. Thank you for replying so fast. I have read in all my research online that people may need up to 1500 mg per day of calcium. My dad was being given "tums" for the calcium but that is NOT the correct kind of calcium that's required. You could talk to your doctor and do lots of research. From what I saw with my dad, even with all kinds of tests, the tests came back as such that the doctors just couldn't figure out dad's troubles and denied that any of it was due to Prolia. I hope they'll monitor you for Endocarditis (infection in the lining of your heart). Maybe you could ask what all the symptoms of this are. Femurs can break with no pressure on them after taking Prolia. Sometimes this is found when there is hip or groin pain and the femur fracture needs to be ruled out. Jaw pain is another common side effect. My dad had blood blisters, water filled blisters and scaly blisters plus lots more side effects. Best of luck to you. My heart aches for you.

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Well, Anne, you have written both. If it is for sure diarrhea, have your Immunoglobbins A and G tested to see if you are allergic to gluten (wheat, barley, rye). If you are, stay away from those items in your food and diarrhea will go away. I had none of the 'normal' signs of Celiac Disease but I tested positive for it. I had severe diarrhea. My iGa was 20. It's a simple little blood test. It causes really bad diarrhea or do an experiment at home -- stay away from anything with gluten in it for a couple of weeks. If the diarrhea stops, you know the cause. Then you may want to pig out once on mac and cheese, breads, cookies, etc. to see if diarrhea comes back. We know for 100% sure Prolia messes up a lot of our immune system so that's why we get autoimmune diseases. If you take care of it if you are positive, it will probably go away around the time Prolia is supposed to go away but I didn't trust it that much so I stayed on rice flour for an extra month. I say it's gone. Dr. says it's in 'remission'. How can something caused by Prolia only be in 'remission'. It makes no sense to me at all because I've never had it before. And, autoimmune diseases would be nice to report to the attorneys that are going after Amgen for Prolia and Xgeva. If I were to pursue the legal route, I'd like to have an 'official' blood test that any Court knows is true. That cannot be argued. We have others here or on another thread that have Sjogrens (sp?) which is when too much bone is deposited where it should not be. One person in their eye and another on their nose. That's also an autoimmune disease. When our immune system goes haywire, we are in for all kinds of nasty things and we know for 100% sure Prolia does this to our immune systems. Please try it out and then write back in a couple of weeks. Hugs~Pood

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Thank you for your reply.
I am now more than ever confused about this drug.

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Hi Moms
What other drugs/treatments have you tried for Osteoporosis? What are your bone density scores? How are your calcium levels? It is critical that you have all of this information and fully understand it before you commit to being treated with Prolia.
Now, read back through the over 900 posts in this forum. There are quite a few others if you Google Prolia. I truly wish that I had done the research. I have spent the last year crippled most of the time. My injection was on January 20 2015.

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Rrd~There is a medical paper circulating in Europe (English speaking countries) entitled 'The Emperor Wears No Clothes'. Please try to find it and read it. You will discover what your Docs are doing for your bones is plain WRONG and there is a PROVEN WAY FOR BONE ENHANCEMENT that they all are doing now. They swear it works and so does the MD that wrote the paper. It was published in one of their medical journals. When we say take the correct supplements and do light weight bearing exercises we know we are telling you the truth - the truth your Dr. doesn't want you to know. Be well~Pood

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Hi all~Just getting an inkling here that our poster 'Moms' was an internet 'troll', just toying with us. Look at the time and dates of the posts and all lack of communication. Had someone a real question, the best place to start is reading all the posts and if one still has questions, then ask. This particular thread goes back to the beginning when Prolia was released. It certainly has not changed much since that time except for the fact we know more information now. Is it just me, or does anyone else have this 'feeling'? Pood

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Interesting we've not heard any more details from Patricia! I had more questions. And I know others did as well.

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Hi Nancy~I Googled the same thing as I wanted to know too. Most I could find was one place where some people posted they had Prolia side effects long after stopping the drug. I did not find any quite like you. They usually started to experience a side effect with the third or fourth injection so quit. You are the first I have read to have it after stopping. Have you decreased calcium intake or any other easy answer? Your body still has a lot of Prolia in it. It's a scientific matter of carbon based half lives. MDs like us to believe it goes 'poof in six months which is a total impossibility. Maybe your muscle problems are not Prolia related at all. I sure would get that checked out very, very well with the best MD's I could find. Perhaps it is something totally different and was (is) caused by what was a faulty immune system which has led to 'xyz'. Be well~Pood

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I did not get the June injection because I had been on it for 3 years (I did have change 4.1 to 3.8 spine) however, with no long term studies I felt 3 years (instead of 5 which my MD recommended was enough time on Prolia before taking a break and now I am hearing that the density only stays while you are on the drug. Is that saying it is not your bone that actually is increasing? I had a bad experience with Fosamax when it first came out with no long term studies. (I now have a small hyatal hernia and Doc does not want me to take anything by mouth. I am 65 and found out at 45 about the density, so I have had it most of my adult life.

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Treva: Please keep us all posted on here. We will be wondering about you. Good luck.

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Tess - please keep us posted : the bloating is something I have noticed, but my metabolism has slowed down since then chemo and tamoxifen shut down my estrogen. I walk each day, watch what I eat, but still have this belly that's bloated!! So frustrating!!! My next injection is due April and I do not want another one, but my oncologist really wants me to have it. My husband keeps telling me I am not a doctor and I need to follow their directives, I really appreciate people like you and Poodle that post on here, it keeps me informed and helps me know I am not alone. Hang in there!

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Rrd - please tell your husband he is not the one suffering, YOU ARE!! We are not 'playing' Dr. here. We are discussing what happens to us on Prolia. Ask him to please sit down and watch their new commercial. It's 99% side effects and 4 words for Prolia. Or, you may want to suggest that he tries out the next injection while you abstain. I'm guessing here that you had breast cancer since you are mentioning some drugs that I know well. Did the chemo diminish your bone density? It has not in others I know including me but we don't all get the same drugs. I would go for any of the other bone building medications since Prolia is a last ditch effort drug. You could tell your Oncologist you would like to try Boniva (injection that lasts 3 months). Reclast is once a year and the first two months are not good at all but still far superior to what Prolia does to us. Also do not have to take them for 10 years. The FDA ruled 'drug holidays' for those two. Look into them and make an informed decision. Congrats on being a fellow survivor and that's a really good reason to not take Prolia because it reduces our immune system and you need yours at 100% to keep that nasty C word totally away. With an impaired immune system you are putting yourself at risk again. We have cancer cells in our bodies all the time. The job of our immune system is to seek and destroy but it cannot seek and destroy when it's not functioning well. Stay well~Pood

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Would like to know if anyone had side effects from Prolia but they went away - and how long did it take for that to happ...

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