Prolia Side Effects (Page 98)
(Newest replies first)

I would like to know of any side effects others may have experienced after receiving Prolia infusions. Up to now I have none.

REPLY

REPORT

I have a therapist that I've seen for some time as she gets me, on a practical level, out of my confused boondoggles, she too fights some serious health issues - - I think I'll be ok - just a matter of getting sorted and recoverying from the physical bullying and shock of another diagnosis. I will ask about the Calcitonin when I see Primary. I think the Primary will keep an eye on my blood tests, and be sure to check the calcium levels. I haven't had much luck with doctors down here - - one Primary was always prescribing meds on phone - and when I went in and told him I was extremely dizzy and totally exhausted and couldn't hardly stand up, he said I wasn't dizzy. Take some vitamins. Lord of Mercy. So I find out I am critical when I visited my Gastro, and rushed to hospital for tranfusion - where they gave me Type A instead of my Type B, when questioned, nurse said Type B could take type A, next day rushed back to hospital where I have a couple bags of blood, tried to go back to work, so stressed and my brain was affected, so I got fired - - and so its gone, no more work, and it left me with a very high stress level that I've never completely recovered from. Had a fabulous hematologist who always kept close tabs and when blood count would sink, he would order quick for a bag of iron before I need transfusion. But he retired and I don't like the new hematologist at all. He didn't even look me in the eye. Said to go home and take oral iron, which I have tried with the Crohns, and it made me pretty sick. BUT I found some easy on tummy iron. So far so good - don't know about the blood count but does't seem to be tearing me up. I just want to runaway when Dr's are mentioned. The only good one was the hand doctor who put my wrist back together. It healed normally imagine that. So .....the osteo can't be THAT bad. And as he said I'm so tall its like two people falling on a leg, a hand, an arm - so don't fall - well, ok, but what are we going to do about the reason I am falling . . . sigh. They sent me to PT and at last one, my knees were shaking outside I went and I don't know what happened found myself on ground staring through tears of agony at a hand and lower arm that had suddenly turned into a walrus flipper. The therapists hid, but the receptionist said she would take me to the hospital. Lord of mercy. I need to just quit thinking about it - if I don't pull out, I certainly will go see my therapist!!!!! I also called my regenerative meds doctor - they took me off of Pro Bono supplements, and said I do NOT want any calcium coming into my body and to follow all the doctors' orders except for the bone meds, and they were very emphatic about Prolia and Reclast especially. I'm supposed to send them all my records from endo and primary and any tests. They too said this condition can kill a person if it escalates. I do know my primary will watch this fairly closely -at least I think he will. So thanks for the encouragement - I will bounce back. Just lost a very close friend to endocrine cancer, and my cousin is in state 4, so things could be a whole lot worse! I need to start some more paintings or charcoals. Yes, doing art - crafts, etc......great therapy in itself.

REPLY

Was this helpful? 0

Diana~there are different types of depression and from reading what you wrote I would say this has been too much for you so you need a little psychiatric help. They are usually wonderful people that do their very best to make us feel good. You want one that does not do talk therapy or maybe you do want to talk all of this out with a professional. Maybe the first one won't be the right one. They are Doctors too so each is different. Find the right 'fit' for you. I really, really love mine as he cares about ME and not the money. They have some meds that I have noticed have zero ill effects and we can smile again. You can smile as you paint, (I do water color) travel and enjoy life. Hypo in calcium is deadly. I don't think having a little too much is a life or death matter. I had the DVT's and PE's too. Whew! That was expensive. 6 grand for a shot. They were another 'present' from my Doc that had me on 10-20 mg Pred/day for a year and then just stopped it. My blood went crazy. It's on my chart so always have to have blood thinners immediately after joint replacements. 6'2" - cool. That's exactly like of one of my greatest friends. Smile. You are going to do wonderfully and the Calcitonin will help build those bones of yours - real bone, not fragile bone like Prolia builds. Hugs~Pood

REPLY

Was this helpful? 1

I'm so glad I'm not the only one who feels so furious at the doctor, hurt, ornery, you name it, for what the doctor did to my dad and my family (we are torn in two) by prescribing Prolia to him. He had my dad on Prednisone for approx 10 years.You know what that did to his bones and no one had a sound answer as to why he was on it all those years. Every time my mom took my dad in for an appt the doctor came up with something new along with a new medication (he was on 21 pills a day when he died) and one of those last times the diagnosis was osteoporosis. I totally disagreed. My mom would not listen. She wouldn't read the info I printed out about Prolia, neither would my only brother (his wife is the office manager where my mom and dad doctored so they wouldn't look into this or question the doctor, whatever he said was the gospel!) It was just me by myself, fighting and saying dad shouldn't have it. Latex allergy, surgery on small intestine (can cause you to not be able to absorb nutrients), severe kidney failure AND unable to take calcium (mom told me he couldn't swallow them AFTER the shot when i told her he HAD to have calcium and Vitamin D) The doctor wasn't even smart enough to put him on those. But these are all reasons that people should possibly NOT take Prolia. Anyway my mom put him on 2 Tums a day when I kept telling her he needed calcium and she thought that was the amount of calcium he needed in those 2 Tums. I told her NO. She wouldn't even ask the doctor about it. Of course Prolia depleted the calcium from his bones until he ached so bad plus all the other side effects he had (Please read my old posts on here from Oct 2014 up until now). I AM SICK. And yes, I agree. Every doctor needs a dose of Prolia to try it out since they think it is harmless! It shouldn't hurt em right??? My poor dad was affected starting the following day after the shot. Hospitalized, nursing home, and so much more. And like many of you have said, my dad's doctor denied that Prolia had anything to do with the instant and lingering side effects that dad got. I'm in question also,now, that my dad may have died of Endocarditis caused by Prolia. He had all the symptoms just before he died but the doctors had not checked him for that. My mom told me after dad died to not even mention Prolia anymore. She didn't want to hear about it. You people hang in there if you can. I am thrilled to see so many posting on here and telling your story. You are helping others of us more than you know. I'll be glad on the day I see this deadly drug pulled off the market. I wish some of us who are on here could get together and do some informational seminars to get the word out. Just beside myself.

REPLY

Was this helpful? 1

Yes, and that is what I am going to say if my Dr. tells me I shouldn't stopped it, I am going to say you take it and get back, but I really can't stand the sight of her so I am going to go to another Dr. in practice.

REPLY

Was this helpful? 2

Sheri, like you I am proactive. But in this - - too many unknowns. The more I think about it with the new drugs that stop bone turn over - scary. And the old ones were scary enough. Right on, everything you said Sheri. We each have to make our choices - most of us are brought up to respect doctors, but I don't think they do as much research as we do! Of course they have not been through what so many of us have been through either. I think each doctor that prescribes Prolia should take a couple of rounds of it. Thank you. Right on.

REPLY

Was this helpful? 1

Diana, you are not the only one who is dealing with depression from all this, so don't feel like you are alone. I get weepy each day that I think that I was so naïve to take 2 shots and do all those bone density medicines even though one was worse than the other. I always thought the next one would be better. The first one Fosamax , I took for so long in pain because that was the way I was suppose to feel. But having all of you has kept me pushing along and strong enough to say NO MORE. I agree I with you I want quality of life now and if in the future I have anything I will deal with it then. I am usually not like that I am a very scheduled person and I feel most comfortable with all my ducks in a row but with this I am throwing caution to the wind. Thank all for being here for each other, Be well, Sheri

REPLY

Was this helpful? 0

Thank you so much Poodle - I felt like a bit of an - I don't know what - after I hit the button and reread my post. What you say makes a ton of sense. And if this endo has only 18 patients, perhaps he hasn't run across one who has had trouble, but then if he considers what I've been through to be a "common cold and cough" and unrelated to Prolia, he wouldn't know if they had side effects or not. Now, I'm used to a load of pain - I live with it. I'm a 6'2" woman and my joints are like rubber - so I've had falls, autoimmune stuff, pulmonary embolism, etc., etc. I am going to tell them, thank you for your interest, but no thank you, may I have some Calcitonin. I read about that too as others recommended it, and it seems to not have a nasty effect. And yes, I am waiting on the surgery - - I have a Renerative Med Dr. and am going to call him, and tell him the latest and get his feed back. It'll cost me for the call, but it will be worth it, I'm sure and double check the calcium and see if he thinks its a concern. Darn, that was not a problem EVER in my 71 years. It threw me for a loop, as on my mother's death certificate was, "Hypercalcemia" or Hypo - can't remember - among a couple others - an arm break that they said they couldn't set. But that's another story. The surgeon who put my wrist back together did a great job and after a year, which is not an unusual time for the type of break, it is healed very well. So I'm also trusting in that, that perhaps these people are pushing me too hard. Thank you thank again so much - everything you say makes perfect sense. Even if I die early I would rather die having painted a few more pictures, taken a ride along the Gulf and written a few more poems than lying in bed out of my mind in pain. Depression can really do a number after a dose of Prolia too! :) I feel better about my reluctance to be "compliant." It is now refusal. Once bit is too bad, twice bit is stupid on my part. :) I'm sorry you had to go through so much, and very thankful you are using it to help others, and that I found this site.

REPLY

Was this helpful? 0

Diana~I am so sorry he was such a horse's pootootie. Most are in denial and I mean total denial when it comes to Prolia. Amgen has done a magnificent job of selling this poison. Yes, a person can tolerate it. We had one this week. How many come and say hurray, it works and I'm fine??? Prolia is supposed to be the drug of last resort when all of the others have failed so what's up with recommending Reclast? I had one whatever one would call it at the hospital of it and for three months all I could do was lie on the sofa definitely not in my right mind. Thankfully both of the girls were here at that time and pretty much watched over me. After that it wore off and I had no problems. Did it help my bones? Not in the least. It lasts a whole year. If you want to play with the bis' I'd go for Boniva as it's only half as long. I stopped speaking to that Dr. after that. He knows I can't stand him so we don't do well together at all. I too was sworn to on a stack of Bibles a mile high that she had had no problems with Prolia until little old me and I consider myself lucky to be alive after it. Fool me once, shame on you. Fool me twice, shame on ME. That is why there are only two that I will take. Prolia had me with a GP, Rheumatologist, Cardiologist and Psychiatrist. The only one with a brain was the Psychiatrist as he told me to be very careful now as my immune system had been compromised. I felt fine and said no problem. I always use alcohol on my hands and wash good. What a dumb bunny I was. Then I found myself here on one of the threads and I commented - Oh my God, what have they done to me and my worst nightmares became my reality. I just kept bugging Amgen and the FDA trying to get some answers which never really came although Amgen did tell me I should feel much better in my 5th month which I did. I got a lot of support and care from people on these threads. Find a new GP. Ask for Calcitonin. It's slow but steady. Prolia is a race horse and that's why we are ill. Slow and stead wins the race. I also noticed improvement after only a year on it on my scan. They will tell you it's a waste of money and doesn't work. That's because there is nothing in it for them. It does work and my Mother and I both know it. She made it from 80 to 96 without ever breaking another bone all because of Calcitonin. It used to be called Salmon Calcitonin. I guess they just shortened it. You don't have to do what this guy wants and you are not in the least crazy, nuts or anything else. You are simply a victim of Prolia. Maybe you had been taking a little too much calcium supplements so cut it down to 600 two times a day and see how that works with your next evaluation. If it still shows high, cut it down 600 more mg/day. I don't really believe you need surgery on your glands. That sounds like someone that likes big MONEY! The internet has ALL of Prolia's side effects listed. It's very valuable especially for people like us. Get a good night's sleep. Tomorrow is a new day and you can start looking for a new Doctor. God Bless, Sleep Well and Be Well~

REPLY

Was this helpful? 0

Dr appt to day. Supposed to be one of best endo Dr's in town. Listned to me and said essentially that Prolia does not have any side effects and that the Primary said I had a cold and cough. I have not had a cold for five or more years. A cough maybe I don't remember as I also came out of years of chronic bronchitis which was years before Prolia. He has 18 people on Prolia and none of them have any problems with it. I do have high calcium and may need parathyroid surgery. That's new since Prolia. So basically I was made out to be an hysterical female even after relating the post Prolia issues which can be easily documented my husband would not go with me to witness what I have been through to the dictor post Prolia that all the things I have been through in last year are not a figment of my imagination. I feel in despair and like an old cat going somewhere just to die. He wants me on Reclast which is year long infusion and has a worse track record than Prolia. When I related the history of my bones he moved up the date of a tibia break when I was 20 when he read it back to me as a more recent break. I'm now 71. This nightmare is getting worse and worse. The only thing he agreed on is I can't take oral osteoporosis meds because of history of Crohns. Pood, right now Crohns in remission. When I find a gastrointestinal doc as mine retired I will ask about that treatment that 1as mentioned. No wonder my mother just curled up in her chair, refused more medical care and died. After years of Fosamax she was still breaking and died. I am going to call my Regenerative Med Dr and see if I can talk to him about this. He will probably say "Run and dont look back." There was more with today's crazy visit but too long to relate. I must get my bearings.

REPLY

Was this helpful? 0

Nancy P~Hi and welcome! There are no holidays while on Prolia according to the manufacturer. With a pain like you are having, I certainly would go for a CT scan to make sure nothing is breaking in your thigh bone. You have been on some very powerful meds so better safe than sorry.

We don't have much information about side effects after stopping Prolia. Amgen has stated they can last 11 months from just one injection; however, we have people here that are three years post-Prolia and are still trying to get their lives back. Many are still unable to walk or just starting to walk with crutches. Just because the Prolia goes 'poof' does not mean in the least that the side effects go 'poof' with it. Please have it checked out just for your peace of mind. Canadian here got a broken femur with only one injection of Prolia and she was in her 4th month post-injection.

Here's a wish for it only being a temporary ouwie and nothing serious. Please keep us informed. We deeply care for those that have used Prolia be it a great result or a bad one. On behalf of everyone here~Be well~By Pood (one of the survivors)

REPLY

Was this helpful? 0

I was on Prolia for 3 years with no side effects, however, I decided not to wait till the 5 years which my doc said was the time for a break. Since being off for 1 year I started to have upper leg/thigh aching. This was shown as a possible side effect when on the drug however there are no answers for after/withdrawl. I learned the hardway with "new" drug Fosamax and ended up with a Hy Hernia.

REPLY

Was this helpful? 0

Thank you Pood,I will try again, hope you are doing well

REPLY

Was this helpful? 0

Sheri-on Amgen's site, go to products they make and click on Prolia and then click on the info as if you are a professional. That's where they hide the goodies. I don't know if I have a copy of mine still around or not. I shoved it under her nose and asked why I didn't get it and she said she had never seen it before. They have totally redone their website tho I guess to make room for more new drugs they make. :-(((( Pood

REPLY

Was this helpful? 0

My Dr did the same thing jabbed it into my arm, I passed 6 months but still don't feel right. Take my calcium and MagOx 400 everyday. I hope once weather warms up, I will feel better . I tried to go on Amgen site and I can't find any Dear patient letters , I am just so fed up

REPLY

Was this helpful? 0

Diana~I called the FDA every week to every two weeks with each new side effect I got. They have quite a large file on me and that's a good thing in my opinion. The crowning side effect was Celiac Disease as that meant that Prolia had changed my iGa which left unchecked could lead to death. It nicely went poof when Prolia went poof. Good luck today. Pood

There is also a new 'belly button' surgery out now for Chrons as my next door neighbor had it last spring. She, of course, had to go to a large city but now she is 100% fine. Pood

REPLY

Was this helpful? 0

Amanda~you are a very, very lucky person. It's nice to know that it actually does help certain people. Did you know that Amgen, Prolia's manufacturer, is saying you have to take it for 10 years with zero holidays? You have a long way to go before you get off of it. Stay well~Pood

REPLY

Was this helpful? 0

Glad to hear it helped you truly. I wish it had helped everyone. Best of recovery to you.

REPLY

Was this helpful? 0

OK. I will stay on FDA and AmGen - until I find what I need, maybe just one more voice will eventually add up. I agree with the importance of an immunologist - I think having Crohns would be an indication that I might not have been a good candidate for this drug. Now they told me Prolla has less side effects than the other popular new one - that's scary.

REPLY

Was this helpful? 0

Also, Diana - call your local pharmacies and ask if they have any Prolia in. If they do, ask them to please photocopy all the info in the box. It has all the side effects listed on it too. It's just a matter that our Doctors 'think' they know everything and don't bother to read the instructions with all the possible side effects on it. Mine did not even give it to me subcutaneously. I got it in the arm that is not supposed to be used for anything -- mastectomy side - and she jabbed that needle straight in as if it were a flu shot. Even if they don't happen to have any Prolia in at the time, their computer should have all the side effects of Prolia in it. It's like when we get anything filled, we get sheets of information that 99.99999% of the time is garbage. With Prolia, it's a gold mine. Be well~

REPLY

Was this helpful? 0

After 1 year on prolia, my osteoporosis improved to osteopenia. Next year more improvement to no problem.

REPLY

Was this helpful? 1

Would like to know if anyone had side effects from Prolia but they went away - and how long did it take for that to happ...

318 REPLIES

I had my infusion Mar 4 2015. I have experienced severe stomach pains, leg pains that wake me up at night, a horrible dr...

200 REPLIES

I developed a red burning itchy lumpy rash after one injection of Prolia. Mainly on face neck chest arms scalp. Anyone e...

34 REPLIES

I'm a 59 year old female, diagnosed with Behcet's Disease and I use Prednisone for treatment for my weekly flare...

7 REPLIES

I am 60 yrs old and suffer from osteoarthritis, osteoporosis, and myofascial pain syndrome. After discussing with my end...

85 REPLIES

I am 81 and had my first Prolia Shot May 7, 2015 and after three weeks I have developed a red rash looking sight UNDER t...

11 REPLIES

Aprox 2 weeks after the prolia injection I started to experience nausea and weight loss. Also, loss of appetite and a ke...

27 REPLIES

I am not going to have my next shot of Prolia due 11 June. I have already had two injections and lately have suffered ho...

128 REPLIES

I am a 57 year old female who has -2.5 bone density scores on hips and -3.4 in the spine. I used Forteo for 2 years, but...

15 REPLIES

What does the pharmaceutical people of Prolia advised regarding its side effects? ## Hello, Lala! How are you? They do w...

29 REPLIES