Prolia Side Effects (Page 19) (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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Thanks, Louise. I've never been back to the rheumotologist (I only went once for a consultation) but they did call many times after that to see if I'd like to schedule a shot. How nice of them. It's a big money maker for these doctors.

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Kathy~The Prolia causes very severe muscle pains and that is what is most probably going on with your jaw too. Mine actually extends from upper arm to side of throat to jaw on that side. I thought I was getting ONJ and went to my dentist who said I was fine but he did find the source of the pain. He pressed on a muscle in my jaw and I about came out of the chair. You can either take very strong pain meds for that or get rid of it at it's source. It's done in physical therapy and is called dry needling. They insert two very slender needles (like acupuncture) so you won't feel them and then use electricity like charging a car battery. It breaks up that muscle band. You can also use acupuncture but I think dry needling is faster -- 3 treatments and it's over. If you are on regular insurance it will probably pay for either but Medicare does not. You have to pay out of pocket. How much are you willing to pay to get rid of it? For me it's a no-brainer. You should also get in with a Psychiatrist if possible for sleep meds. You will sleep like a baby. As for the other issues all I can say is yes, it's HELL and I'm so happy I'm about done with it. No more for me in this lifetime. It's actually a chemo drug and I don't have cancer so why should we take it? Hopefully, your MD will give you some pretty strong pain meds so you can work. My personal thought is 10mg of Oxycodone every 6 hours. I know how that goes. No work, no money and no insurance. You are not going to be on it long enough to become an addict so you should be able to have it. Close to month 5 you will start feeling human again I hope. I am so I can only hope you are the same. Please make sure you inform the FDA and Amgen of every single side effect. That's the only way we are going to get it changed or deleted. Be well~Pood

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Carolyn~The half life of Prolia is only 26 days. However, if one looks at half-lives mathematically, they go on into infinity. There is never an end to a half life. One should get better in the 5th month so that means that your body is doing what is written on Amgen's site -- it can take up to 11 months to clear this from your system. You should be doing pretty well for Christmas. You've had it this long so it's going to be a few more for you. I'm so very sorry!! If there are any Clinical Hypnotherapists near you or even a decent Consulting Hypnotist, I certainly would go as they are able to change things in the mind and the mind rules the body. At the very least, s/he should be able to give you total and complete pain relief. Possibly even getting rid of the 'Prolia rash'. We are not allowed to post links or I would recommend some of the finest in the USA. It's a very old and very safe if you find someone that has studied with the 'right' people and learned all there is to know. It's widely accepted in England and more often than not, it is the first choice. The US is just slower at catching on to what really works and HYPNOSIS WORKS!!! The first consultation is free. If you don't like the person and don't believe s/he is capable, keep on walking and find one with whom you are comfortable. You have zero to lose and everything to gain. Be well~Pood

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Just an FYI for all. I checked with a pharmacist and the low dose steroids are fine for awhile and they do control the pain. I have been put on steroids for the next month at which time I will have 3 months under my belt. In my frustration I went to a well known Health Food Store of which I've never been before. I reviewed my current prescriptions (my doctor removed my cholesterol medicine while going through this) with this gal and she was extremely helpful. She asked if I had tried a sauna. A sauna is a natural way to get rid of toxins in your system. She doesn't know if it will help but she thought it might cut down the time Prolia stays in your system. It makes sense and I am planning on going on Monday. I will let you all know if it helps or not. Steroids are keeping the pain in check but it's always there - it doesn't go away. I am not a person that takes pain meds very well. They make me drowsy and I just can't navigate with them and since I'm going back to work on Monday, I need to be alert.

My jaw problems are the most severe. It feels like I have a constant toothache and earache. My hips, back and groin are in second place. I'm going to try the sauna first and if that doesn't work I'll try the PT dry needling. I'm going to do my best to get off prescriptions. I am a healthy person and this Prolia has caused all my problems. I am 60 years old, 5'3'' and 125 lbs. My mother never took calcium, drank milk or went to a Dr for over 20 years. She probably had osteoporosis too but never knew it because she never had a dexi scan and it didn't seem to bother her. I will NEVER take anything for osteoporosis again. The cure apparently is worse than the disease. I take something for high blood pressure and high cholesterol but there are natural ways to alleviate those also. I think we just get lazy and a pill seems to be the easy way out. There are natural ways of taking care of high cholesterol and blood pressure although they are more expensive than what the drug company will pay for. I think it will be worth it as they have no side effects. I'm getting off the medical merry-go-round. I will keep you updated as to how the sauna works. Something has to get this out of our systems!

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how long has your sleeplessness/insomnia lasted? I got the prolia inj. on 8/20/15 and almost immediately began the insomnia - when I always slept 7-8 hrs. per night with no problems or pills. I am 75 years old and have had 4 lumbar and thoracic kyphoplastys. I only get 4-5 hrs. sleep per night now and that is with the aid of .25 mg. Xanax and 15 mg. temazepan. I am at my wits end!!

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Kathy~you are not going to believe this. Mirtazapine which is actually an anti-depressant but it makes people sleepy, Valium, Tizanidine which will have you sound asleep in 10 minutes or less, and Temazepam which is an actual sleeping pill. If I happen to wake up in the middle of the night or 4am, we start it all over again except for the Mirtazapine as too much of it is really bad for the liver. Also Tiz helps for muscle cramps too as it's what people with MD or MS take too. It just happens to be very sedative. I am allowed 2 of those also in the day time when the muscles in my back start bugging me. There's a limit of 7 per day. That's what I mean about Psychiatrists working very differently from regular doctors. They find what works and then they continue it. In the beginning it's a little experimentation but mine are sufficient to put down a cow or a horse. I wake up in the morning feeling great with no hangover effect at all. I highly recommend this for people with the Prolia insomnia. He just smiles and says: We do what works for our patients. Wish they all had that attitude.

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Poodle~ I take Alprazolam and it does help me sleep. It's for anxiety. I don't sleep like I used to but I get a good 5-6 hours of sleep and I can live with that. My jaw is my issue. Sometimes the pain is unbearable. I also have Thrush in my mouth that I guess a lot of people get when they are on chemo and taking steroids and antibiotics. My dentist said there are so many nerves in your jaw, neck, mouth. My teeth quit hurting when I lay down for awhile but start back up as soon as I start moving around. If I could just get my jaw to quit hurting, I can live with the rest. I got some rinse for the Thrush and I was told that yogurt or a probiotic would help the Thrush. I have an appt with my Dr on Wednesday to go over my medications and I want him to do some blood work on me. I think he finally has to admit this is the Prolia. I have covered all my bases and I don't know what else I can do. I'm going to ask about a pain shot for my jaw. It helped with my hips but I want to know the ongoing issues before I do it and I'm not sure they can do a pain shot in your jaw but I'm going to ask. At this point it really can't hurt any more than it does.

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And I'd like to add to Poodle's information on the half life, this is what a pharmacist from the FDA told me. Yes, the drug has a half life as all drugs do and yes, the drug should diminish to almost nothing (at some point), length can be different for everyone depending on your own body, however, the side effects can still be with you for much longer depending on what Prolia did to the body while it was in you!! The side effects are what may effect you the rest of your life. For me, the pharmacist at the FDA gave me the most information. I felt that the "salesmen and saleswomen" at Amgen are exactly that. For me they turned my story around and made it out to be the way they wanted it to be. I ended up hanging up on them because they refused to listen and interrupted me nonstop. I'm pressing on with my venture to my state rep to get the procedures changed as far as side effects being reported (making it mandatory that the doctors must report side effects and not have it voluntary by people like you and I), mandatory follow up by the doctor to the patient within a stipulated amount of time of receiving drugs like Prolia, and making it mandatory that when we go to the doctor they MUST enter any drugs that we are on into a Drug Interaction program (there are many online) and inform the patient of the problems they might have when being on those particular drugs. I feel that SOME doctors don't really know how different drugs interact with each other or sometimes they don't take time to research it. They simply give you a new drug, take you off this one and give you that one, etc and meanwhile people can develop horrible health issues from those drugs alone or interacting with each other, some of those health issues can't be reversed once they happen. We need to stay as healthy as we can without drugs if we want a longer life with as much quality as is possible.

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Canadian~ I asked the pharmacist at Amgen. She looked it up and said that it would lower blood pressure but didn't know if it would do anything to get this out of your system faster. It was recommended to me by a lady at a health food/supplement store. If you are itching more than I wouldn't do it again. I'm guessing but I bet it is the toxins coming out. When in a sauna you sweat out the toxins in your body. It's supposed to cleanse your body of all toxins when you sweat. That's the part that kind of scared me. I was hoping that it would get the Prolia out of my system faster and it probably will but may make my problems worse for now. I don't think my jaw can handle any more pain right now. I will try it but I think I'm going to wait until the 90 days is over. According to the pharmacist at Amgen, you shouldn't get any NEW symptoms after 90 days. This crap must hit different parts of your body at different times. To start with my back and hips killed me. About a month after the shot my jaw has been intense pain. Thanks for letting me know about the sauna. I did notice my right eye was blurry for awhile after the shot but I don't seem to have any issues with it now. It still wouldn't hurt to go to your eye doctor. I wonder if Prolia was invented to keep ALL the doctors busy?!

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I'm not sure I believe that person at Amgen. With Prolia anything can happen! They are still doing clinical studies which means even they don't have all the right answers. After the 3 month period was when I got my auto-immune disease. Everything they say I take 'with a grain of salt'.

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I had a prolia injection 3 months ago & NEVER AGAIN! The morning after the shot I woke up with a mouth full of ulcers. On my tongue, the roof of my mouth, & all over my gums. I had no sense of taste for 2 weeks after this episode. I went to an oral surgeon with fright & he took a biopsy of the roof as well as the tongue. The results was a bacterial infection. from the immune system. He said it could very well be the prolia shot since attacking the immune system is one of the side effects. In 2 or 3 days after the injection, my thighs, hips, & groin became extremely painful & has gotten progressively worse with each passing day. My leg muscles are weak & sore & find it hard to keep my balance when standing or walking. NEVER NEVER AGAIN!!!!!

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Marilyn, Amgen is now stating that one has to be on Prolia for TEN years for it to work. Can you believe all this hell for nothing!! It's so new that our Doctors don't know what they are talking about or how to make us feel good while on Prolia. It is a chemo drug as it's twin is Xgeva for bone cancer and Prolia just has less of the active ingredient in it than it's twin does so that's the reason for all of our problems. We are going through chemotherapy to improve our bones in TEN years. I wish there were attorneys that would take us on even if we don't get money to get this off the market. I've had one and NEVER AGAIN!! I'd rather live in a wheelchair in a nursing home than have Prolia in my body. Today is supposed to be the 'magic' day for me when Prolia is supposed to be 100% out of my body. I did have surgery today but the Dr. was very cautious and has me on antibiotics for one whole month. I'll let everyone know how it goes for me from now on. I'll be the guinea pig. Be well~

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It has been over 4 years since I got my only shot. ONLY, ONLY, never again. Still suffering. It really affects all the nerves in your body.

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I have had my second s*** and once again the same side effects only worse. Skin rash that don't stop driving me crazy. Joint pain which I don't know if it's from my lupus or prolia. Severe lower back pain and pain in my hips. When I tell my Dr he says it's nothing to worry about but I'm the one in pain. And no he gives me no medication for any pain. He only offers predisone which I refuse to take because of its side effects.

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I seem to be getting better but luckily I began noticing all the side effects
before I was due to take another one in October (this year) If I had not
been paying attention I probably would have taken the shot and got worse.
I seemed to be improving but I agree that I will never touch Prolia. The
company that makes this says they are still running trials on this shot
and that means it is not PERFECTED and all of us were guinea pigs. I am improving but my doctors are denying it is Prolia.

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Carolyn~I think your description is exactly the way we all feel on Prolia --" just want to curl up and die" but I do promise you that you will get through this because I did so you will too. I didn't mind chemo when they said I had breast cancer but I was not on it for 6 months either and there was a good reason for it. I do not believe they should be allowed to use this drug without telling us that it is actually chemotherapy for our bones and they are doing a 10 year study on it now. Apparently, that means we are all the guinea pigs???? Just know there is life after Prolia and I am here to tell you all that I made it and you will too. Hugs, prayers and most of all BE WELL~Pood

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Micky - because the doctor did not provide care for our side effects, we came here not for complaining, INSTEAD, we are looking for hopes, sharing info, and solutions for our critical side effects. I am a 61 and my health was good before the injection, I feel my life is threatening by the critical side effects. Bless you already come out from the toxin Prolia.

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Canadian - you are going to live. What you are writing about now is very normal for people on Prolia. Smile : - ) Every day you get closer to the end of Prolia. I know it seems impossible but it's true. Get yourself a good pain med -- I gave you two different options and that will take care of that part of the Prolia problem. Who knows what will be next? Maybe zero. We are in uncharted waters here so be glad you are getting by day by day and that you have family and a list of friends here that care about you. Stop this silliness of death NOW!! The only ones that really died probably already had one foot in the grave -- in their 90's. Be well~Pood GET IT - BE WELL!! Think about that all day long and repeat it over and over and over. The mind controls the body. Learn how to control the mind.

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Happy Holidays everyone. I think that the Prolia is finally leaving my system. I have been taking 5mg Prednisone daily and have been reducing the dose for the past month. I stopped taking it entirely four days ago. I have developed some pain in my right hip. Not to bad though. I can live with it if it doesn't get any worse.
So far no rash or blisters. My fingers are crossed. Maybe after nearly a year the Prolia is letting go of me.
I hope that all of you are able to make a full recovery.
Prolia is a nasty dangerous drug. The FDA should ban it and also triple check all biologic drugs for safety.

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Gayle, keep us posted on your test. Would love to know the outcome.

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