Prolia Side Effects (Page 42)

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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Canadian~Drs. do not understand Prolia yet. It's too new. You will have to find a friend that has a printer hooked up with their computer so you can take the written list of side effects with you when you go to the Drs. They would love for it to be just you, but we all know it's not just you. It's all of us and it's all from Prolia. That is the only way they are going to believe you. Be well~Pood

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It seems as if my diarrhea was viral and because of a impaired immune system it lasted much, much, much longer than it should have. Dr. said about 3 days and mine was about six weeks but now getting very well again. Maybe some day in the far future Doctors will know how to deal with the side effects of Prolia. Soon will be the start of my 6th month so hopefully 99.9% of it will be gone from my body. Be well~Pood

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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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Anne~you need to be put on a Rx pain medication so have your Dr. refer you to a Pain Specialist immediately. Secondly, muscles hurt really badly could be a sign of not getting enough calcium as our bodies cannot store calcium so Prolia robs it from our muscles. OUCH!! You need a minimum of 1200 mg calcium a day with 1000IU's each dose of Vitamin D. Some magnesium helps too but don't take too much as it can cause diarrhea in certain types of magnesium. Look on the net for the magnesium supplements that don't cause diarrhea or loose stools. If that does not help your muscles, go to Physical Therapy where they do what is called 'dry needling' as that will break up the tightened muscle bands. You will also need a referral to them. We can survive Prolia but we need a lot of help to get through it. Your immune system is not working well now so be very, very careful and I don't believe one can be careful enough because viruses, etc. are just in the air we breathe. If you had your injection in March, you should be pretty much clear of Prolia even tho the company writes that certain side effects can last 5 more months after the beginning of month 6. Hope this finds you much better~Pood

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Thanks Pood, I am feeling a little bit better. I will power through this and enjoy my self in spite of the Prolia. I appreciate the encouragement.

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Next week I am seeing a neuroscience Dr. My primary Dr referred me to a heart specialist after complaining of fainting, dizzy spells when standing and walking, leg weakness, loss of strength, body aches, increased headaches and migraines have increased all over tiredness, my jaw seems to be moving. By that it seems like my mouth feels more comfortable if I slide my jaw forward so bottom teeth are protruding in front of upper teeth ( I only do that when no one is around). I also found that you ca t have dental work done while on prolia. Back pain is the worst so it's makes it very hard to do much house cleaning. Also there is pain in my right ankle sometimes when walking that feels like it will snap and break if I bend it while walking and just plain feeling like I'm dying from the inside out. I am 70 and have always been very active........until my last Prolia injection (my 4th and last), that is when I figured out that it was the Prolia!!!! With each shot all symptoms progressively got worse. My Dr. Assistant who gave me my last shot told me that the other patients who started Prolia months before me, most didn't have good results. GREAT, I thought as she is injecting me with this poison. So now it has been 3 months since my last and final shot and it was time for my yearly mammogram and bone test ( haven't had bone test in 2 yrs because Dr said need time to show progress). Well it came back as no change from 2 yrs ago. Probably because 3 months ago he increased my D3 to 3000 iu daily (I think that is unsafe amount). Anyway, even if my feeling bad went away today it has cost me almost 2 yrs of my life, maybe more because this last shot isn't over yet and I believe many of my side effects will continue because they just seemed to intensify with each Prolia injection. No more for me. As to seeing the neuroscience Dr. That is yet to be seen. Not sure why I'm referred to him as the heart Dr said it's just so "we" cover all the bases......What the heck.

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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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Poodle! Good Luck in hopes of the stuff being out of you on what many health care professionals have led people in to thinking that "it'll be magically gone from your body in 6 months" I have stated this in my previous posts starting back in October. This is just not true for SOME (most) people. According to the pharmacist at the FDA, The drug itsself might be gone but NOT the side effects. I post on here in hopes of helping others spread the word as to what can possible happen based on what my poor dad went thru. Hoping to have people give some serious thought before getting the drug. I sure would like to know how some of the people are doing today who posted on here 2 or 3 years ago and were sorry at that time that they got the infusion of Prolia because they were having trouble. I'd just like to know, are they better?, are they worse?, in nursing homes?, what happened to them? Please DO keep us posted.

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Anne, I have the same reaction to Temazepam. I take 30 mg at bedtime and another 30 mg when I wake up so I can sleep through the whole night. On rare occasions I may get through a whole night but usually not. It seems to be overly stubborn with Prolia. Be well~Pood

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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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Anyone has felt any better after prolia got oit of their bodies? Anyone improving or with dissappeared symptoms? Please give hope!!

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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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You are a fortunate person not to have any side effects from prolia. I for one have had every one there is from this nasty shot. NEVER AGAIN - NEVER AGAIN! It has attacked my immune system, not to mention the severe pains in my thighs, hips, & groin. I can barely walk from pain. The muscles in my legs have gone haywire & are very painful. At night I wake up with leg spasms & hurting so badly I cannot sleep. I went back to the Dr. that prescribed this to me & of course his first suggestion was to give me a pain med. I wish all Drs. were required to take the injection prior to suggesting that a patient take it, then he or she could actually feel what it does to you. I am 3 months in & the pain gets worse with each passing day. NEVER EVER AGAIN!!!!!!!! Again, you are a fortunate person & wish you the best the rest of the way.

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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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Marilyn ~ As to the jaw problem. Some people have had braces put on their teeth to hold everything together until the Prolia is over. It's on a different Prolia page on this same site. I think there are about 8 threads going now about how horrid Prolia is on this website. I've even been having nightmares about Prolia. Be well~

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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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I had the injection on 9/25, the next day I started having all the side effects. Dizziness, weakness, Skin problems - itching, rash, muscle pains, stomach pain, sprams, chest pain, feel like short of breath. Taking high dose of vitamins make my stomach more worse. Those side effects still come and out everyday and no sign of stop. I hate myself I was so stupid taking this poison stuff. The doctor who prescribed me this shot denied all the side effects from Prolia. Yes, I agree that the doctors should take it before they give the shot to the patients.

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yes, RM, I've passed the 'magic' day and so far all of the side effects except for two are all gone. I'm still losing some hair when I brush or shampoo it. I also still have the autoimmune disease it gave me but other than those two, I feel good. I 'think' the autoimmune will cease in about 6 more months or so. I don't believe it's going to be a lifetime thing like the Drs. want me to believe. It was caused by Prolia so it will eventually work it's way out of me. I went on a plane trip to a large city and caught nothing so my immune system must be coming back around with so, so many people in the airports and in the planes. There is life after Prolia and I can say I'm really happy to have most of it out of me. There is never an end to a half life so there will always be a cell or two of Prolia in me but not sufficient to cause any problems. My surgeon has me on antibiotics for one solid month. Does not want to take any chances even though I'm 'technically' free of Prolia. Happy Pood. I know what the rest of you are going through as I had everything Prolia had to offer and some others that were new to Amgen. There is a good life after Prolia. I promise!! I also found my bone scan. It seemed that the Salmon Calcitonin worked pretty well. My T-scores went lower in most areas so it should be a good one for when everyone gets this poison out of their bodies. It's not fast but it works and doesn't harm us. Be well~Pood

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Pood! Thank you! Have you or any of you guys had or heard of someone having ringling and numbness in feet, legs and or hand? Has anyone recovered from this? My mother got this just 2-3 weeks after prolia. It hasnt dissappeared! She wants to know if there is anyone out there with something like that and if you've got better!

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Yes, RM, on Amgen's site they state that is a problem some people have with Prolia. As our MD's don't understand Prolia well yet as it's too new, please take a printed list of the side effects with you to your GP who will then refer her to a cardiologist, just to make sure it is not her heart as Prolia causes an infection in the muscles around the heart and can also cause very high cholesterol. The cardiologist should do an echocardiogram and have her wear a Holter monitor for 24-48 hours or how many days it would be needed as it records exactly what the heart is doing. As far as I know, there is nothing they can do for it but they do say it is serious and to get help immediately. If you cannot get into your family doctor quickly, go to the ER as Amgen does state this is a serious problem. After you do this, please report back so others will know. Hoping you have a printer with your pc or one of your children does. Wishing the best for her~Pood

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