Prolia Side Effects (Page 37)

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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Yes, I had Reclast. It's getting close to being recalled by the FDA. Right after the Reclast I was sick in bed for three solid months and my brain wasn't working either. The reason the FDA is leaning against it is it doesn't go away in the human body so you can have it for X amount of time and then you have to take what they term a holiday from it. Again, no dental work and many of the same problems as Prolia. If you want to 'try' it, I would do Boniva first as it's only 6 months, not a full year. And, just like Prolia, there is no way on this Earth to get it out of you. I cursed my Drs' name and just recently went back to him. That was in 2011. I don't trust MDs that cause me great harm. I think I would look more towards something like Evista although it has it's problems too. At least if I got cancer, they would know what to do which is more than we get with the others. Get on the net and do your own research. Do not trust any physician to tell you the truth. It's good that you asked here. I'm sure I'm not the only one. A new medical article has been published in Europe entitled 'The Emperor Wears No Clothes'. That Dr. suggests we do not take any of these meds and take our Calcium, Vitamin D and Magnesium plus light weight bearing exercises. I like the approach and cannot find any flaws in what he presented. That is the exact path I will be following. Be well~Pood

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I am 60 years old and was healthy before Prolia. I had hurt my knee on June 30th and they found that I have arthritis in it. I took my first Prolia shot on 08/03/15. I started having hip, groin and back problems. They did MRI's on my lower back, hip and knee. They did xrays on my neck and lower back. They didn't find anything wrong. I went to a pain specialist and was given a shot for pain in my hips and groin and it did help for a small amount of time. They have done blood tests for bone disease and found nothing. I was on Evista and Alendronate in the past. Both of these drugs caused severe jaw pain to the point it sent me to the dentist to find there was nothing wrong with my teeth. Then I went to aftercare because I thought I had an ear infection or sinus infection. I had neither but that doctor said that my jaw was swollen and perhaps it was the osteoporosis drugs. When I quit them the pain went away. My doctor wanted me to try Prolia. I have been in utter agony since I had that shot. My jaw hurts so bad that I have trouble chewing and talking. I have been checked from head to toe and they are finding nothing wrong and my doctor still is not convinced that the Prolia has caused these problems but I am. I was given steroids for the pain and they helped but a website was sent to me by a friend saying that you should not be on steroids when taking Prolia. These are the medications that you should NOT be taking while under the effects of Prolia:

•Steroids
•Cancer medications
•Topical steroid alternatives such as tacrolimus
•Cyclosporine
•Azathioprine, etanercept, CellCept and Simulect

Here is the website: progressivehealth.com/review-of-prolia-osteoporosis-medication.htm

I too have had sleeplessness, night sweats, headaches, sore throat, weakness in legs. If you are considering taking this drug, PLEASE think twice! I had no problems before but a bone scan said that I had osteoporosis so my doctor thought we needed to treat it even though I had no problems. Osteoporosis can't be as bad as this drug. I have not been back to work since the beginning of July but will be returning Monday only because I have to. I'm single and I need to work. I'm not sure how I'm going to do it. No one seems to know how long this drug has effects and there is NO WAY of removing it from your system. The only ones benefitting from this is the drug company and the doctors which I'm sure are getting a kickback for everyone they put on it. Stay away from this - it is poison!

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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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Hi Sedona, have you felt any better now that 6 months have passed? My mom has experienced numbness and tingling of the feet, legs and sometimes hand fingers. Not hypocalcemia at all, its prolia. We are desperate to know from someone who has felt better after prolia is out of the system and how long did it take...
Hope you are all better

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Katie~That's normal for Prolia. As my cousin wrote me: That Prolia sure whipped your as*. It's going to stay that way too until you get into month 5 or even 4-1/2. Then you start feeling more like a person should feel. A lot of things did not get done around here this summer due to Prolia. That's okay. They'll wait for me as there is no magical jen that comes in and fixes everything neat and tidy. You are doing good to take a shower and wash your hair and keep your clothes somewhat clean, let alone the dishes too. Hang in there. There is a light at the end of this horrible Prolia tunnel. Just be smart and don't do it again. Learn to say NO! Be well~Pood

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Hi Poodle, I had a Prolia shot on January 20. It has been over eight months for me. There has been very little improvement on the symptoms. Blisters and pain and stiffness are a recurring part of my life. I don't know how long this will take. I am told that the half Life of this medication is longer than previously thought. So it can, to some extent, be in your body forever.
The corrupt Drs that were paid by Amgen to tout this dangerous drug should be sued and lose their license to practice. It has always been about the money. We are just the expendable lab rats. The FDA is no help. They will wait until this whole thing is impossible to ignore then fine the drug company a gazillion dollars which will go into the government wallet. We, of course, are left with nothing except our destroyed bodies.

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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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There may be a legal case one of these days. Lawyers have just not found out how horrid it really is or we would be seeing the ads on TV. Problem is they win. They take the money and the individuals (us) in that suit end up getting maybe $16. There is one going on now on TV about the mesh implants for people that have had blood clots and PE's. The mesh was supposed to stop the clot from getting into the heart and lungs. Apparently it's falling apart and people are getting metal in their hearts and lungs. My Dr. had recommended this for me in 09 and I said no thanks. They were only caused by my body going off of a large amount of Prednisone for a good year and they soon quit on their own. 09 to 15. That was about 6 years so we may see one against Amgen in less than 6 years. I know we are in a 10 year clinical study as a guy named Mike at Amgen admitted it to me. He'd get fired I bet if they knew what he told me. 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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Hi Kathy, you didn't specify the Prednisone dosage. I have been taking 5mg because of a flare up. I will be going back to a half pill soon. That tiny amount keeps most of the symptoms in check.
Most of my pain and stiffness is in my hips and back. I have some in my hands and wrists. I also get a blistering rash on my hands, elbows and thighs. I have been, at times , unable to get out of bed unassisted or walk without a cane. The Prednisone helps me function at a near normal level.
I hope it works as well for you. Your comfort level should increase as the steroid builds up I your body.
Good luck and I hope that you feel much better very soon
Carolyn

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Carolyn~ I take 5mg twice a day. That barely keeps it in check. My jaw is extremely painful most of the time but I don't want to take more than I am. I also seem to have a steady sore throat. My doctor put me on an antibiotic but it doesn't seem to get any better. Not sure if it's from the stress/pain of Prolia or not. I haven't had any rash issues yet and hope that I won't. I would think since I am 2 months into this that hopefully it won't start. I have recently had issues (the past couple of days) with diarrhea that I'm hoping is from the antibiotic and not the Prolia. I do have the weakness and exhaustion that seems to come with this and yet I have issues with sleeping. I really wish I had checked into this more before I took it but now I'm just trying to outlive it.

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Kathy, you will outlive it. That's a promise. It does make any kind of life very challenging to say the least. Since our immune system is compromised your sore throat may be from a cold or strep or it may be a muscle in your throat. I do wish Doctors would just stop saying stupid things like "That must hurt" and really find out WHY it's hurting. The Prolia is causing it but you need to know what 'it' is so appropriate action can be taken. I've been in the care of a rheumatologist, cardiologist and psychiatrist. Thank you Prolia on behalf of the medical association. I sure keep the Doctors busy. Even now in month 5 feeling like a human again it is difficult to get the energy up to vacuum this whole house. Prolia also gave me Celiac Disease. That's lovely. I don't know if it's going to disappear in the 6th month or if I have to wait to month 11 to get rid of it. The Medical profession would like to say it's forever but I KNOW 100% sure it was Prolia. I well understand basic biology. I certainly had zero problems before and it was not the cause of my osteoporosis. That was from a whole year of Prednisone 10-20mg/day. Do get in with a Psychiatrist. They have excellent meds for sleep and some that help sleep also help muscles, like Tizanidine. They are not afraid of drugs like regular MDs are. Someone should have you on a very good pain medication too. Not OTC type drugs. Have you called Amgen to complain? They will start a file on you. That is the only way they can change or delete this drug. The FDA just keeps a record of it and I was told if they get more like mine they will put big warning labels on it for the Docs. I don't believe that's going to help very much though. Please get appropriate medical help and don't let them get by with stupid excuses. DEMAND A REAL ANSWER. Be well~Pood

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Poodle~
I am going to go the natural route. I truly believe that someday there will be a mass law suit against Prolia and I don't want anything that I do now to go against me then as I plan to be one of the first ones in line! This drug is poison and no one should go through this! The steroids keep the pain to bearable. I really don't want to add anything else as everything seems to have some side effects and then I can't tell if it's the Prolia or something else. I was on an antibiotic and the last couple of days I've had diarrhea and I'm not sure if it's the antibiotics or the Prolia. I quit the antibiotics today as they don't appear to be helping the sore throat anyway. I guess time will tell. Thanks for the information but I'm going to try the sauna to see if I can get some of this poison out of my system. I'll let you know how it works.

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Kathy - maybe the diarrhea is like mine was and it turned out to be a gluten intolerance, a/k/a Celiac Disease. Prolia caused it in me. Maybe if you lay off of any gluten for 3-5 days you will know. It shows up in a blood test when they test your iGa. If iGa is 20 or lower, you cannot eat anything with gluten in it (wheat, barley & rye). They don't just do A, they do G and others too to rule out other things. It's a simple blood test that every Dr. should do on us when we are ill and they don't know why. It would be beneficial to have that when you go against Amgen. You didn't have it before so it would have come from only one immune system tampering drug called Prolia. This goes with your yearly physical , a CBC, then the remainder of the blood. Is your MD really that out of touch with reality?

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Poodle~
Can you tell me when your side effects started to subside? I know they say 4-5 months and 90% should be out of your system. I called Amgen today and reported my side effects. She said they report directly to the FDA. I had my shot on 08/03/15 and my hips are somewhat better but I also had a pain shot given to me on 8/25 so I'm not sure if it was the pain shot that helped or if that particular pain is starting to subside. My jaw, teeth and ears are extremely painful. I am on low dose steroids. 5mg twice a day. It keeps the pain bearable but it's still always there and I have constant headaches because of the jaw. You stated that you are on your 5th month of this. When did you start to notice improvement? I seem to have new side effects as time goes on. My jaw didn't start bothering me until Labor Day weekend which was a month after I had the shot. I had a bone scan last Thursday and it came back as clear. Sometimes you wish they'd find something that was fixable. I was just wondering at what point did you wake up and think "Gee I'm not in agony today". I keep thinking if I have a date to look forward to, it will make this much easier. Thanks for the help.

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Kathy, I had my shot on April 22 - a day that will live in infamy. I was fine for about a week and then it hit and hit me hard. It has just been the end of August was some better and now in September I am pretty much symptom free except for insomnia. She made a huge mistake and injected the Prolia into my ARM instead of under the skin. I also take a large amount of pain medication as I cannot have my hip replaced or knee replaced until I am totally Prolia free which will be Oct. 22. I'm having the cataract surgery first on Nov. 4. I am still on sleep meds from my psychiatrist and I don't know when that will end. I won't need the pain meds after I get my 'replacements'. Yes, I have arthritis and it hurts but it's not anything like Prolia. I do feel like a human being again tho. I even had a gout like condition on the ends of toenails - different toes on different days. Could have 0 touching my toes. I also feel much better as we found the cause of the constant diarrhea - Prolia gave me an allergy to gluten so as long as I stay gluten free I'm fine. I'm hoping that will clear out in the 11th month but for now I'm dealing with it and doing well on rice flour. Had my Dr. not done the extensive blood testing, I would probably not be alive as all my food went out one end or the other and I was quickly shrinking away. I've gained weight now. My dentist told me to stay away until I am symptom free and he told me if anything happens I cannot help you. You have to go to xxx, my dentist type people that do implants/pull teeth and fix gums, etc. He did find the source of the pain in my jaw and it was a muscle on the same side that got the shot. He knew I really hurt so he spent the extra time to find out why and it didn't take him very long at all. I think with Prolia, the squeaky wheel gets the grease especially when you walk in looking like close to death. I'm sorry to have to write this to you as you are a recent victim but you are also a much smarter victim and we are all here to help each other. I was bugging my Psychiatrist about when is this going to end so he gets on his pc and starts looking around and I said: You don't happen to be on MedChat do you. I'm Poodle so that was the end of his searching so an intelligent Dr. must know this is the place to go to find the truth about medications. I had about everything Prolia has to offer in the way of side effects except for cancer and death was getting close and I had some that Amgen didn't know about before I reported them. You will get through this but it's going to be very, very difficult. Stay on the sofa and watch TV as much as you can. You will get to a point to where you even hate it. If we had a decent hypnotherapist around here I would have gone immediately and acupuncture relieves a lot of pain. Be well my new friend~Poodle

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I got my shot in my left arm and I have had stronger issues with my left side. What do you mean they should have put it under the skin? Was the shot administered incorrectly? I seem to have new issues constantly and I had my shot on 08/03/15. In the last week, the inside of my mouth and tongue are sore like if you burned your mouth on something hot or like a sore throat throughout your mouth. Is anyone else having this issue? I am at 56 days from the shot. How long after the shot do you quit getting new side effects? I'm assuming that this is from the Prolia as I've never had that before either. Amgen stated that things should start improving after 90 days so I'm assuming that I shouldn't be getting any new issues after the 90 day mark anyway. Counting down the days.......

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It is over a year since my post re. my sister in Canada. I have avoided posting because there is very little positive to say. It has been a year and a half since the last shot which was not the first. In April she was hospitalized with a staff blood infection because her immune system was not able to function. At 80 pounds and no immune system she had an 80% chance of dying. The hospital was smart enough to discharge her after 3 days away from the germs of hospitalization. I went to be with her for 5 weeks and the massive antibiotics worked. The untold story on this site is that the body is permanently affected by the many damages caused both directly and indirectly by Prolia. Probiotics and digestive enzymes are also never mentioned and a god send in trying to regulate the body after this massive unnatural attack. Rick

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Hello there! My mom got tingly and numb feet and feet fingers. Also the leg sometimes. She started with these symptoms 2 weeks after prolia. She still has this synptoms and she is on her 6th month after her first prolia shot. Nobody can tell her it the prolia is causing it by being on her system or of the prolia has done some damage. She wants to knownof anyone got something like this, if it gets better and when! Thank you

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Kathy, it's Pood again. Yes, Prolia is supposed to be injected just under the skin called 'subcutaneously'. It' is NOT supposed to go directly into an arm, thigh or tummy. I would have done it myself as I've done subcutaneous on myself before but Prolia comes in kind of a screwed up injection thing with very specific instructions so I thought (WRONG) that I should have my Dr. do it. If yours went straight into your arm like mine did, that means you are in BIG trouble like I was. I actually watched her inject it and she jabbed that needle all the way into the muscle in my right arm up toward the shoulder area -- about an inch below. That seems to cause us horrid muscular pain. Now why your mouth hurts like burned I cannot say. That's a new one. It's beginning to sound to me like the people at Amgen are telling all of us different things. You get told something totally different from the times I've talked with them. I do know for sure they are doing a 10 year clinical study of Prolia and I really believe we are in that 10 year clinical study without knowing it. This was told to me by a guy named Mike that works the Prolia part for Amgen. Previously when I had called I got women (nurses). Has your MD any clues about your mouth. That is not listed as a side effect so it has to be new too. Do ice cubes help it feel any better? I kind of thought I had Prolia all figured out until you showed up and that puts me back at the drawing board. We know it's Prolia but from what in Prolia is making your body do that. If you can find an excellent hypnotherapist, ask if they can take you back before you had your Prolia injection and leave you at that point in time. It's kind of tricky as people will say well you had xyz and you will be denying all of it. You have had a pain shot and got some relief. How about real pain medication that is taken by mouth by you every 4-6 hours as needed. You have to be careful of some of them as they contain a lot of Tylenol which is very unhealthy but there are others that contain zero Tylenol and work wonders so there is no danger to your liver. Prolia really is a living nightmare.

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