Prolia Side Effects (Page 5)
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Alexis Says:
 
Would like to know of side effects after Prolia infusion from other persons. Up to now I have none.

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945
Rrdulworth Says:
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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
Poodle Says:
 
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
Poodle Says:
 
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
Poodle Says:
 
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
Poodle Says:
 
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
Kitty Says:
 
C Louise: Thank you I was able to find the information. Keep up the good work!

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939
Poodle Says:
 
Anne~I was on 90 mg mirtazapine (an anti-depressant that causes sleep), 60 mg of Remeron, 40 mg valium, 24 mg of tizanidine. The last 3 were divided out between when I went to bed and the next dose - when I woke up in the middle of the night. It seems with Prolia they only lasted 3-4 hours without taking them again. I was not allowed more mirtazapine as 90mg is already maxed out. I absolutely refuse to take Xanax. it's difficult to quit. I am not having to remed in the night so it has been cut in half but I'll probably have to wait a couple of more months to end most of them and I know he will have me do it very, very S-L-O-W-L-Y. I am still sleeping really well. Tizanadine is really nice too if you want a little nap in the afternoon for a couple of hours. One 4mg tablet = a very nice nap. That I will have to keep until I get my back done -- it's a muscle relaxant and I'm allowed one in the day time if my back starts acting up. It's a weird combination, but Psychiatrists do whatever works and they will tinker with it until they get perfection. I asked to try the new Belsoma or whatever it's name is. I got 1 hour sleep and the bottle was returned to him the very next day. Hope this helps~Pood

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938
Poodle Says:
 
Kitty - use whatever 'search engine' you usually use, be it Google, Yahoo, or whatever and key in "Amgen Corporation". You will land on their home page. They make lots of different biologics so you have to search thru their products to find Prolia. Click on it. Then all of their information on Prolia becomes available to you from the clinical study, to packaging info, how the inj. should be given and a Dear Patient Letter that apparently our MDs do not bother to use. There are other websites with more information on side effects; put in Prolia and they list far more side effects than Amgen admits to. The info I give to people here is straight from Amgen. I only use others for backup purposes.

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937
Poodle Says:
 
F~I have never heard of anyone yet to have kidney/kidney dialysis or liver problems from Prolia. If a previous kidney/kidney dialysis problem were known, the Dr. should not have given her Prolia. It is contraindicated. Heart problems - yes, immune problems - YES, bladder infection - YES. There is a group of ladies in Australia that have their own forum on Prolia but I don't remember what it was. They are as unhappy as we in North America are with it. You can go to Amgen.com and copy the label that comes in the packaging, also they have the 'Dear Patient' Letter that none of us got and they list most of the side effects. We know there are more but they are not listing them yet. If I were you, I would call Amgen on the phone (it's listed on their website) and ask them straight out about the kidney because there has to be some kind of a relationship between Prolia and the kidneys or they would not want people with kidney problems to take it. Perhaps that is one pathway by which Prolia leaves the human body?? MD's don't seem to know the answer to this question and I'm not sure that Amgen does either.

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936
C Louise Says:
 
Hi Kitty! I hope I can help you find the labeling changes. Go to FDA.gov then click on the "Drugs" tab along the top where all the tabs are then on the right hand side under spotlight click on "search drugs @ FDA" (the second item). This will take you to a new page and in the search box type in Prolia and push submit. This will take you to another page, it should say "drug details", scroll down just a bit and click on label if that's what you would like to see. Then scroll down and you will be able to see all the dates of label changes. Click on the word "Label" in the box over towards the right hand side on the date you would like to see (dates are on the left hand side of the chart). You will then have to scroll down to page 2 of the label information and on the left column you will see "Recent Major Changes". This is where it lists what was changed on that particular date. I hope this helps. If not, please let me know, I'll try to help more. On the "drug detail" page (if you choose to go back there) you can also click on Letters, REMS, etc and see other information as well. Prolia and Xgeva are listed together as they are both considered denosumab. Good luck. You can call FDA and get to one of their pharmacists also if you ever have questions. I've actually had pretty good luck in speaking with them.

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935
anne Says:
 
What type of "cocktail" did your psych. give you?? I am in the US, not Canada, but can have access to Canadian names of meds translated to US meds.

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934
Kitty Says:
 
Where can I find the Prolia labeling changes? Please be specific as to where they can be found.

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933
anne Says:
 
poodle, does the Insomnia ever go away? I used to sleep 7-8 hrs. every night with no interruptions and now am on Restoril max. dose (a benzo) and get 5-6 hrs. at times and others 7-8, but all interrupted and I hen have to take a Xanax. I was never a pill taker in my life. I am 76 yrs. old, but very active and only retired at 75. Now, all of a sudden, I got IBS-D according to my doctor and believe me, that diet is like eating cardboard and I sure miss my morning cup of coffee!!

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932
Fiorina Says:
 
I would like to know how long it will take for the body to get rid of Prolia. My siter is 83 years old, had 1st Prolia and hd mild side effects,2nd Prolia she said never felt this worse in her life....she had to be ospitalized, 3 weeks and tests came all good, doctors said it is strss! My sister doesn't know what to do anymore, one day she fees better other days her blood pressure goes up, she has to stay in bed feels dizz confuse agitations rapid heart beat.Doctor doesn't explain why she feels this way.she lives in Australia,she askes me if I could find out if the body will get rid of this awful medicine! She is afraid the medicine hurts the liver and kidney! Are other with the same simptoms? Please help my sister Thank you Fiorina.

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931
C Louise Says:
 
I just want to take a minute to thank every person who might still be on this site from time to time for contacting the FDA or Amgen and reporting your concerns, complaints, side effects, etc. The FDA has required many changes in the labeling and literature in this nasty drug Prolia during 2015. Almost monthly changes so I think we're getting through to them just a little bit. Please keep contacting them. I would love to see this drug pulled off the market. I have yet to see ANYONE who had had help with their bones from this drug if that's the reason they were put on Prolia! You can correct me if you know of anyone. And I know some people said Amgen is now telling them it will take 10 years! I'm not sure how Amgen knows that unless their evaluations started over 10 years ago (and I don't know how we know that) because Prolia has only been on the market for about 5 years! I'm working to get it to be mandatory that health care providers must check their patient weekly for side effects when being put on this awful drug of Prolia. It is sooo important to have blood calcium levels closely monitored while being on this drug which my dad's were NEVER checked by his prescribing doctor when my mom would take him for appts. It only got checked by a doctor in the hospital months after being on Prolia and only because I insisted. At that point they were about ready to put dad on life support as he couldn't breath, they thought he was having a heart attack, and many other issues. His labs came back showing very low blood calcium levels so they started IVs to correct it and within 2 hours he began to improve. His calcium levels were never checked again after that and he continued to go downhill with the same issues plus additional side effects. So very sad. My dad was miserable from day #2 of being on Prolia. Just please keep contacting the FDA and Amgen. You are appreciated more than you know! If this drug was helping people it would be a different story but I see it doing more harm than good.

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930
Poodle Says:
 
Ann~ insomnia is a common side effect. Most people get it while on Prolia. I had a nightly cocktail from a psychiatrist that kept me sound asleep. Amgen states that one can have constipation, I believe. I would suggest another blood test for your immunoglobins to make sure it didn't give you Celiac Disease. It did me and I had your symptoms. I really could not believe the results of the blood test when it was sent to me. It would be iga that would be low. It's a simple blood test. For some strange reason, it seems like Prolia loves to cause autoimmune diseases which then disappear when it disappears. There are now 3 confirmed Sjogrens and my Celiac Disease. That's what happens when they tamper with our immune system and Prolia really tampers with it a lot. Not only are we prone to infections, it causes our own bodies to turn on us. Cannot say I loved the food but it was better than the problem. Be well~

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929
Canadian Says:
 
My recent Calcium level is 2.29. I think it is equiv. to 9.17. the doctor said it is ok, but I am not sure is it a good level for a Prolia victim or not?

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928
Canadian Says:
 
Poodle - I didn't stop taking calcium and vitamin D, now my calcium has magnesium in it. If I felt crampy, I took extra magnesium also. Even when I had told the doctor that magnesium also help to stop muscle cramp (especially needed for Prolia), they just didn't believe in it, they all said it only help to stop constipation. My goodness.

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927
Kitty Says:
 
Poodle: I am sorry you had to endure so many side effects. With that being said, because of your experience you have helped many on this site.

Just a comment on the ten year study. Type in "New data show consistent safety profile up to ten years". It is dated 10/12/15. The article reports on the "safety" of Prolia over a 10yr. period.

I didn't have time to read the article. Amgen told me originally, Prolia was tested on 7,800 people. Half were given Prolia the other half non active ingredients in Prolia. If I remember correctly this study was done for three yrs. Maybe they continued the test on the same people up to 10 yrs? I don't think we (general public) are part of the 10 yr. study.

As for sending mice/rats into space, I know that weightlessness does increase bone loss. Maybe that is why they send them into orbit?

I also want to encourage patients with adverse effects to contact the FDA.

Wishing all a HEALTHY New Year!

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926
anne Says:
 
I HAVE THE OPPOSITE, ibs-dIARRHEA and my far bigger problem is Insomnia which began shortly after my first Prolia shot. Does anyone have any of these problems - one or the other or both?

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