Prolia Side Effects (Page 111)
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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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959

Moms,
Don't be confused. Be very certain before you allow ANY biologic medication, especially Prolia to be injected into your body. There are other options. There are several oral meds and a inhaled spray that may work for you. Increasing your calcium intake and weight bearing exercise will definitely help.
Make an informed decision and do not be pressured into anything that you are not completely comfortable with. Not by the Doctors (Prolia injections cost between $1100.00 and up, big profits) and certainly not by friends (they are not subject to the consequences).
Good luck Moms

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958

So, Moms, Your post is from Saturday. Does that indicate you had the injection or are going to have it next week if you are in North America? There are easily 1000 people on different threads of MedsChat that write how badly we feel and need help which doesn't come and you decide to go with the poison Prolia. Care to tell us your reasoning? We would really like to know. This is not counting Forums in Australia where they are just as unhappy and suffering like we are in North America. You believe the FDA has nothing better to do than put more cautions on Prolia? The next injection for me will be over by dead body. You will have no needed surgeries because you won't have much of an immune system nor can you go to your dentist. You cannot even have a flu or pneumonia vaccine. You can only go to the specialists for ONJ and teeth problems. If you think for one second your Doctor is going to help you when the pain and problems of Prolia set in, forgidaboudit. What about lawyers looking for Prolia victims do you fail to understand?

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957

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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956

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

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955

R~gluten free is unable to help your side effects unless you have Celiac Disease -- an autoimmune disease in which one has severe diarrhea from gluten. It's a huge drain on your money. There is no correlation between Prolia and gluten unless you develop and autoimmune disease from Prolia. Read all the facts about Prolia. Be well~Pood

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954

My advise to you is DO NOT TAKE THE PROLIA! One in a thousand have no side effects & the rest of us suffer horribly. I am now 5 months & 5 days into the injection & am in horrible pain still. Pain in thighs, hips, legs, muscle weakness & spasms, pain down both legs & can barely put one step ahead of the other. Before prolia, I was a happy heathy active person. Prolia is Poision to most of us. I have reported the side effects to the FDA & Amgen (Maker of prolia) for what good it did. I am now searching to find a class action lawsuit to make them pay for the quality of life that I have lost so far. As strong as the effects are 5 months in, I think they will linger many months after the 6 months are up. Or maybe a miracle will happen -

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953

Hello Moms and welcome~True, many Doctors are recommending Prolia. Then after all our side effects start up, they have no idea what to do for us. Prolia has to be taken every 6 months for 10 years to truly be effective according to the manufacturer, Amgen. I had a broken back and 4 breaks in my hips. It was much more preferable than Prolia. Prolia does make bone but it is brittle bone so what have you gained by taking Prolia? Search the net well before you take that first injection because there is no way on this Earth to get it out of your body. Prolia is really a 'chemotherapy' drug and you most probably will have all the problems people have with chemo. Your immune system will not be working well. Look on Amgen's own site at the side effects from their clinical trials. Do you want that? The FDA in the US is continually updating cautionary info for our Docs to read about Prolia as if they really read about more and more problems we are having with Prolia. Please tell your Doc you pass and would prefer something else. There are also other internet sites that list the side effects in great detail. My Dr. pushed me into it for which she greatly apologized and told me I have every reason to HATE her. Get all dental work done first. Get dental clearance. Make sure you have a pre-injection blood test to test your calcium level. Read the Dear Patient letter. Be informed. We have numerous threads on Prolia. Read all of them~Pood

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952

Hello Friends,
My doctors are recommending I take the Prolia.
I have read all of the information about it as well as its side effects.
I have been reluctant to take the shot and have held off.
I just agreed to go ahead with this process.

With all of your posts, thoughts on whether I should take this injection?
Any and all posts/replies are welcomed.

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951

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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950

Poodle, I have severe diarrhea - at least 2-3 times per day. I thought MiraLax was used as a stool softener.

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949

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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948

C. Louise they have me on extra calcium and each time I go in for my check ups my calcium is still low, they up the dosage. I currently take 1000mg a day. I also have chest pains, but contributed it to indigestion. I suffer from onset of fatigue and I am normally a very energetic person. I do not like to complain, I just want to find answers

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947

This is incredible!!! I failed to mention in my post that in August of 15, I had surgery for severe cellulitis. I have a job I absolutely love and I feel as if am letting down my team. Thank you for your post. I just found a supportive general MD and she is willing to get to the bottom of this by running as many test as necessary. My oncologist is the one that started the injections.

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946

Rrdulworth! My dad went through these exact things that you're going through but after just one infusion of Prolia. You can read my previous posts. I was so against him getting even one unfusion because my dad had had surgery on his small intestine, he had a latex allergy (ended up with severe cellulitis in the arm where he got the infusion within one day of getting the infusion) and he had severe kidney failure. All things that are cautioned about getting Prolia. His family doctor told my mom and dad there were rarely any side effects! It's a really long story. Anyway, it's very important to have your "blood calcium level" monitored. My dad's was only checked once when he was hospitalized and because I demanded it be checked. He almost died.My mom had just agreed to put him on life support. I pulled the doctor aside and demanded his "blood calcium levels" be checked. Blood work was done. His levels were very low. They started him on IVs to correct the blood calcium and within 2 hours he started to be able to breath and his heart enzymes started to correct. The doctors thought he was having a heart attack but he was only having "symptoms of a heart attack" due to the low blood calcium. I feel very strongly about having the levels checked and I will be concerned about you. Please report back on here if you have had this checked as I will be wondering.Are you taking any calcium? This is important also. I hope you'll read my previous posts starting in October 2014. As you can see from all the other wonderful posts on here you are not alone. I post my dad's experience on here to try to spread the word about this horrible drug and to try to help other people. I know many others post on here for the same reason. You can call and talk to a pharmacist at the FDA if you have questions. They seem very knowledgeable and willing to answer. I will pray for you to feel better soon. A pharmacist at FDA told me the Prolia will be be gone (at that magical date of 6 months as the doctors make their patients believe), however, patients MIGHT suffer from side effects of the drug for an undetermined amount of time longer than the 6 months. I hope you will keep letting all of us on here know how you're doing.

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945

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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944

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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943

Hi all~I was just playing on the net and found various legal firms that are looking for Prolia victims. Most of them seem to be on the broken thigh bone but not all of them -- some just state if you had any bad problems with Prolia or Xgeva, call us. Those that are still in misery may want to make a call. The manufacturer of a previous bone enhancement drug got sued and lost so perhaps it's past Amgen's time to get sued and lose. If I were not well from it, I would have called. Your decision to make~Pood

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942

Anne~Have your immunoglobins checked, specifically A. With what could be IBS but mostly diarrhea on Prolia, I'd wager you have a short term version of Celiac Disease. No big problem - just stay away from gluten until the Prolia disappears probably in the early part of the 6th month. I was a little cautious because I didn't want to go back that way but, yes, it's gone and I'm fine. I told my Dr. Her reply was: It's not gone. It's in remission. Interesting since Prolia tampers with the immune system and causes autoimmune diseases. She just didn't want to admit it. It's only a blood test and you have to be eating gluten for it to work. Then they can make 100% sure now with another follow up blood test specifically for that. Hopefully, that's it as it's an easy fix. There is a pretty good array of GF food on the market now. I also had a diarrhea bug I caught after I was GF and my Doc was going to refer me to specialists because I didn't get well in 3 days so it could not be a bug in his mind. Finally, my immune system killed it before my appt. with the specialists. They are totally unable to reason when it comes to being on Prolia. Hope you are sleeping better~Pood

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941

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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940

C Louise: Thank you I was able to find the information. Keep up the good work!

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