Prolia Side Effects (Page 100) (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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Amanda~you are a very, very lucky person. It's nice to know that it actually does help certain people. Did you know that Amgen, Prolia's manufacturer, is saying you have to take it for 10 years with zero holidays? You have a long way to go before you get off of it. Stay well~Pood

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Diana~I called the FDA every week to every two weeks with each new side effect I got. They have quite a large file on me and that's a good thing in my opinion. The crowning side effect was Celiac Disease as that meant that Prolia had changed my iGa which left unchecked could lead to death. It nicely went poof when Prolia went poof. Good luck today. Pood

There is also a new 'belly button' surgery out now for Chrons as my next door neighbor had it last spring. She, of course, had to go to a large city but now she is 100% fine. Pood

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My Dr did the same thing jabbed it into my arm, I passed 6 months but still don't feel right. Take my calcium and MagOx 400 everyday. I hope once weather warms up, I will feel better . I tried to go on Amgen site and I can't find any Dear patient letters , I am just so fed up

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Sheri-on Amgen's site, go to products they make and click on Prolia and then click on the info as if you are a professional. That's where they hide the goodies. I don't know if I have a copy of mine still around or not. I shoved it under her nose and asked why I didn't get it and she said she had never seen it before. They have totally redone their website tho I guess to make room for more new drugs they make. :-(((( Pood

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Thank you Pood,I will try again, hope you are doing well

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I was on Prolia for 3 years with no side effects, however, I decided not to wait till the 5 years which my doc said was the time for a break. Since being off for 1 year I started to have upper leg/thigh aching. This was shown as a possible side effect when on the drug however there are no answers for after/withdrawl. I learned the hardway with "new" drug Fosamax and ended up with a Hy Hernia.

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Nancy P~Hi and welcome! There are no holidays while on Prolia according to the manufacturer. With a pain like you are having, I certainly would go for a CT scan to make sure nothing is breaking in your thigh bone. You have been on some very powerful meds so better safe than sorry.

We don't have much information about side effects after stopping Prolia. Amgen has stated they can last 11 months from just one injection; however, we have people here that are three years post-Prolia and are still trying to get their lives back. Many are still unable to walk or just starting to walk with crutches. Just because the Prolia goes 'poof' does not mean in the least that the side effects go 'poof' with it. Please have it checked out just for your peace of mind. Canadian here got a broken femur with only one injection of Prolia and she was in her 4th month post-injection.

Here's a wish for it only being a temporary ouwie and nothing serious. Please keep us informed. We deeply care for those that have used Prolia be it a great result or a bad one. On behalf of everyone here~Be well~By Pood (one of the survivors)

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Dr appt to day. Supposed to be one of best endo Dr's in town. Listned to me and said essentially that Prolia does not have any side effects and that the Primary said I had a cold and cough. I have not had a cold for five or more years. A cough maybe I don't remember as I also came out of years of chronic bronchitis which was years before Prolia. He has 18 people on Prolia and none of them have any problems with it. I do have high calcium and may need parathyroid surgery. That's new since Prolia. So basically I was made out to be an hysterical female even after relating the post Prolia issues which can be easily documented my husband would not go with me to witness what I have been through to the dictor post Prolia that all the things I have been through in last year are not a figment of my imagination. I feel in despair and like an old cat going somewhere just to die. He wants me on Reclast which is year long infusion and has a worse track record than Prolia. When I related the history of my bones he moved up the date of a tibia break when I was 20 when he read it back to me as a more recent break. I'm now 71. This nightmare is getting worse and worse. The only thing he agreed on is I can't take oral osteoporosis meds because of history of Crohns. Pood, right now Crohns in remission. When I find a gastrointestinal doc as mine retired I will ask about that treatment that 1as mentioned. No wonder my mother just curled up in her chair, refused more medical care and died. After years of Fosamax she was still breaking and died. I am going to call my Regenerative Med Dr and see if I can talk to him about this. He will probably say "Run and dont look back." There was more with today's crazy visit but too long to relate. I must get my bearings.

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Diana~I am so sorry he was such a horse's pootootie. Most are in denial and I mean total denial when it comes to Prolia. Amgen has done a magnificent job of selling this poison. Yes, a person can tolerate it. We had one this week. How many come and say hurray, it works and I'm fine??? Prolia is supposed to be the drug of last resort when all of the others have failed so what's up with recommending Reclast? I had one whatever one would call it at the hospital of it and for three months all I could do was lie on the sofa definitely not in my right mind. Thankfully both of the girls were here at that time and pretty much watched over me. After that it wore off and I had no problems. Did it help my bones? Not in the least. It lasts a whole year. If you want to play with the bis' I'd go for Boniva as it's only half as long. I stopped speaking to that Dr. after that. He knows I can't stand him so we don't do well together at all. I too was sworn to on a stack of Bibles a mile high that she had had no problems with Prolia until little old me and I consider myself lucky to be alive after it. Fool me once, shame on you. Fool me twice, shame on ME. That is why there are only two that I will take. Prolia had me with a GP, Rheumatologist, Cardiologist and Psychiatrist. The only one with a brain was the Psychiatrist as he told me to be very careful now as my immune system had been compromised. I felt fine and said no problem. I always use alcohol on my hands and wash good. What a dumb bunny I was. Then I found myself here on one of the threads and I commented - Oh my God, what have they done to me and my worst nightmares became my reality. I just kept bugging Amgen and the FDA trying to get some answers which never really came although Amgen did tell me I should feel much better in my 5th month which I did. I got a lot of support and care from people on these threads. Find a new GP. Ask for Calcitonin. It's slow but steady. Prolia is a race horse and that's why we are ill. Slow and stead wins the race. I also noticed improvement after only a year on it on my scan. They will tell you it's a waste of money and doesn't work. That's because there is nothing in it for them. It does work and my Mother and I both know it. She made it from 80 to 96 without ever breaking another bone all because of Calcitonin. It used to be called Salmon Calcitonin. I guess they just shortened it. You don't have to do what this guy wants and you are not in the least crazy, nuts or anything else. You are simply a victim of Prolia. Maybe you had been taking a little too much calcium supplements so cut it down to 600 two times a day and see how that works with your next evaluation. If it still shows high, cut it down 600 more mg/day. I don't really believe you need surgery on your glands. That sounds like someone that likes big MONEY! The internet has ALL of Prolia's side effects listed. It's very valuable especially for people like us. Get a good night's sleep. Tomorrow is a new day and you can start looking for a new Doctor. God Bless, Sleep Well and Be Well~

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Thank you so much Poodle - I felt like a bit of an - I don't know what - after I hit the button and reread my post. What you say makes a ton of sense. And if this endo has only 18 patients, perhaps he hasn't run across one who has had trouble, but then if he considers what I've been through to be a "common cold and cough" and unrelated to Prolia, he wouldn't know if they had side effects or not. Now, I'm used to a load of pain - I live with it. I'm a 6'2" woman and my joints are like rubber - so I've had falls, autoimmune stuff, pulmonary embolism, etc., etc. I am going to tell them, thank you for your interest, but no thank you, may I have some Calcitonin. I read about that too as others recommended it, and it seems to not have a nasty effect. And yes, I am waiting on the surgery - - I have a Renerative Med Dr. and am going to call him, and tell him the latest and get his feed back. It'll cost me for the call, but it will be worth it, I'm sure and double check the calcium and see if he thinks its a concern. Darn, that was not a problem EVER in my 71 years. It threw me for a loop, as on my mother's death certificate was, "Hypercalcemia" or Hypo - can't remember - among a couple others - an arm break that they said they couldn't set. But that's another story. The surgeon who put my wrist back together did a great job and after a year, which is not an unusual time for the type of break, it is healed very well. So I'm also trusting in that, that perhaps these people are pushing me too hard. Thank you thank again so much - everything you say makes perfect sense. Even if I die early I would rather die having painted a few more pictures, taken a ride along the Gulf and written a few more poems than lying in bed out of my mind in pain. Depression can really do a number after a dose of Prolia too! :) I feel better about my reluctance to be "compliant." It is now refusal. Once bit is too bad, twice bit is stupid on my part. :) I'm sorry you had to go through so much, and very thankful you are using it to help others, and that I found this site.

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Diana, you are not the only one who is dealing with depression from all this, so don't feel like you are alone. I get weepy each day that I think that I was so naïve to take 2 shots and do all those bone density medicines even though one was worse than the other. I always thought the next one would be better. The first one Fosamax , I took for so long in pain because that was the way I was suppose to feel. But having all of you has kept me pushing along and strong enough to say NO MORE. I agree I with you I want quality of life now and if in the future I have anything I will deal with it then. I am usually not like that I am a very scheduled person and I feel most comfortable with all my ducks in a row but with this I am throwing caution to the wind. Thank all for being here for each other, Be well, Sheri

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I have a therapist that I've seen for some time as she gets me, on a practical level, out of my confused boondoggles, she too fights some serious health issues - - I think I'll be ok - just a matter of getting sorted and recoverying from the physical bullying and shock of another diagnosis. I will ask about the Calcitonin when I see Primary. I think the Primary will keep an eye on my blood tests, and be sure to check the calcium levels. I haven't had much luck with doctors down here - - one Primary was always prescribing meds on phone - and when I went in and told him I was extremely dizzy and totally exhausted and couldn't hardly stand up, he said I wasn't dizzy. Take some vitamins. Lord of Mercy. So I find out I am critical when I visited my Gastro, and rushed to hospital for tranfusion - where they gave me Type A instead of my Type B, when questioned, nurse said Type B could take type A, next day rushed back to hospital where I have a couple bags of blood, tried to go back to work, so stressed and my brain was affected, so I got fired - - and so its gone, no more work, and it left me with a very high stress level that I've never completely recovered from. Had a fabulous hematologist who always kept close tabs and when blood count would sink, he would order quick for a bag of iron before I need transfusion. But he retired and I don't like the new hematologist at all. He didn't even look me in the eye. Said to go home and take oral iron, which I have tried with the Crohns, and it made me pretty sick. BUT I found some easy on tummy iron. So far so good - don't know about the blood count but does't seem to be tearing me up. I just want to runaway when Dr's are mentioned. The only good one was the hand doctor who put my wrist back together. It healed normally imagine that. So .....the osteo can't be THAT bad. And as he said I'm so tall its like two people falling on a leg, a hand, an arm - so don't fall - well, ok, but what are we going to do about the reason I am falling . . . sigh. They sent me to PT and at last one, my knees were shaking outside I went and I don't know what happened found myself on ground staring through tears of agony at a hand and lower arm that had suddenly turned into a walrus flipper. The therapists hid, but the receptionist said she would take me to the hospital. Lord of mercy. I need to just quit thinking about it - if I don't pull out, I certainly will go see my therapist!!!!! I also called my regenerative meds doctor - they took me off of Pro Bono supplements, and said I do NOT want any calcium coming into my body and to follow all the doctors' orders except for the bone meds, and they were very emphatic about Prolia and Reclast especially. I'm supposed to send them all my records from endo and primary and any tests. They too said this condition can kill a person if it escalates. I do know my primary will watch this fairly closely -at least I think he will. So thanks for the encouragement - I will bounce back. Just lost a very close friend to endocrine cancer, and my cousin is in state 4, so things could be a whole lot worse! I need to start some more paintings or charcoals. Yes, doing art - crafts, etc......great therapy in itself.

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I had testing done with the Rheumy. I still haven't got the blood panel results but a 24 hr urine calcium was high. He seems to think that it could be primary hyper parathyroid & asked if I will have them removed. I stopped taking vit D and calcium which I had started again do to worrying about not enough inky diet. But I think they were making me feel ill. I'm going to ask about calcitonin and forteo again when the parathyroid issue is worked out. I'm so exhausted and hope the prunes are helping in me.

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Yes Skittie~I go to the same so I don't have to get a separate Pain Specialist. She has absolutely no problem with what I'm on and she started to write out a Rx and I said: No, not now. I'm good until about the 19th or so.
Most people in her office are pretty old so probably would not know that she did not have her iPhone on when she looked up the Calcitonin. She did not open Safari and look up anything. The screen was black. I have checked all sites on the net, the FDA and MDA and they have no comments about it. Flat out lie!! She did my shoulder well so that was worth the visit for about 3 months. She also refused to believe my severe hair loss is from Prolia and had zero comment about when I mentioned the pain going up my neck into my mouth from the injection of Prolia she did ONE year ago WRONG. I'm going to GP to get PT to dry needle it and get my Calcitonin. One year is long enough to wait from this poisonous Prolia. Then a drug rep came in and she argued with him that his pills are worthless and the only things that work are the injectables which make Prolia seem to be like an aspirin. What an interesting afternoon. I washed my hair Sat. eve. and had it all gathered up from the drain it was clogging so she could see it and I forgot the bottle. That definitely is not old age and I'm not that old. Never had it before and in one year I all of a sudden am in old age? After Prolia, maybe! It does take it's toll on us. Even according to the Feds I'm not in old age yet. Pood Gurrrrr

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Skittie~forget the prunes and go for cranberry-pom juice. There is something in that pom that really works pretty quickly. I can only have 1/4 glass of it and then add water otherwise I'm in the bathroom in a few hours.

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Post Prolia I also have high calcium. Was told if it gets higher c a n be life threatening and I may need parathyroid surgery. Another side effect of Prolia?

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Someone made a wise point here - if this doesn't affect our body, why don't they give us the Prolia pamphlet along with the medicine? Thanks for the tips for the Eucerin - I used it years ago for dry skin - - will try it - the sores are starting to clear up some, but have a ways to go. The ones around my ankles burn still - I can't imagine how terrible it would be if they all burned like that. Husband bought me a new shower with power jets to stream water and these long warm showers with water pounding on my midsection and haunches seems to be helping the skin too. Ya'll are saving my sanity. When the medical profession tells you that all these side effects are not real, and offer no other explanation, one tends to wonder about their sanity, yet the proof is not only invisible, but also very visable. Being pushed into the doc's office in a wheelchair two weeks after Prolia shot, does the doctor think I'm a hypochondriac? Determined not to care, but push through to do whatever we have to do. Next project - write AMGEN. So their plan now is Reclast. No way.

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I am with you on the nasty side effects of prolia. Today is 8 months after the shot & am still having bone pain in thighs, hips,buttocks & down left leg. Better known as sciatica, caused by prolia as it affects your nervous system. In the last 2 mo. have developed dermatitis, psoriasis, & warts on bottom of foot. They are all related to the immune system which prolia has compromised & is side effects from the poison. Still having muscle spasms that keep me awake at night & am still having hair loss 8 mo. post injection. I spoke with someone @ Amgen (Maker of prolia) yesterday for the 3rd time since Aug. 2015 to no satisfaction again. I then called my insurance Co. to try & convince them to stop approving prolia for payment to Drs. as it is a dangerous drug & they have had to pay for all Dr. visits caused by the side effects of prolia. I will continue to call both Amgen & my Ins. Co. each week until my pain & skin conditions are gone. Good luck to all.

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Go to FDA site. Fillin paper send back to them.

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Pood, your doc sounds like a crazy to me that she can sit there and lie to you and deny this is incredible. I thought she said that she was sorry she did this to you? Age isn't causing any of this.. that is the lie they tell themselves after they cause harm. I had some docs try to tell me my vision damage was due to aging but it was from dka and trauma during dka- I set them straight on it the minute anyone says something like that. I feel horrified by what she has said, ugh. I hope eventually you find someone else to give you painkillers. I can't drink juice most of the time now because of diabetes unless I'm hypo but I will try some pomegranite fruit. The prunes also lower my ldl, lets hope it's building bones too. I called to get my bloodwork results and the actual doctor left a message to call him tomorrow. I hope that isn't a sign something else showed up. I'm so exhausted and feel horrible and I didn't even have prolia, lol. Thank god for all of you and that I came here and read all of your comments here. My father looked up all those drugs and said no way don't ever take them.

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