Side Effects Following Prolia Injection (Page 4) (Top voted first)

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I am 60 yrs old and suffer from osteoarthritis, osteoporosis, and myofascial pain syndrome. After discussing with my endocrinologist, I received my first injection of Prolia two days ago. Had diarrhea approximately 12 hrs later in the middle of the night. Awoke the next day with headache over entire head and face. That evening (12:30 am) I vomited approximately 10 times in succession. Awoke 5 hrs later with terrible pain and tightness from the top of my head down my neck, shoulders, and upper back. I am frightened to see where the pain will travel next, especially after reading the posts on this forum. Is there a drug out there to counteract the Prolia. I will definitely not be getting another shot in 6 mos. My doctor told me that the main side effect of this drug is worsening of skin conditions, such as eczema. Does anyone have any suggestions?

85 Replies (5 Pages)

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47

Now it is happening in Australia ! My wife had Her 2 nd ( And LAST) injection of PROLIA 7th June 2016 = Bach, hip, neck. pain. Tingling down the legs, EXTREME LETHARGY. She used to be a go gettem 78 year old. I cant believe what PROLIA has caused in her. The A.F.D.A should remove it from it's list
.D

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48

Just had the first prolia injection.I just got over a cold....now breaking out with a itchy rash all over my body......feeling tired....I don't sleep through the night. ...I won't take the second shot....

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49

I have been experiencing, dealing with and treating similar symptoms to yours for 8 months now. As far as I know there is no drug or protocol to counteract the Prolia. I have a supportive primary care doc who has been good with treating symptoms as the arise and also referring me to specialists. At 3 months I was still my worst and went to Mayo Clinic for help. It has been a long journey- after month 6 post Prolia shot I felt a little better each month. When I look back 9 months I am better... than I was. My immune system is upside down, I have severe pain and cramping, my digestive track is a mess, all my muscles are weak, I can't sleep... but am looking forward to slow and steady improvement as the Prolia leaves my system. I have been told 1 to 2 years...I can wait, I have no choice. This Prolia journey is not the one I would had ever chosen had I understood the risks and side effects. My doctors did not understand the drug Prolia either. I am truly sad that you are just beginning this journey yourself- all those posting on this site have been on their own Prolia journey. We have learned much from each other. Thank you again to everyone who shares here... Our journeys continue...

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51

Well I am 47 --- same boat have had the LANAP invasive gum procedure that my folks paid for since I can't . I have had bone loss already in my jaws and not willing to go through all of that again. Severe degenerative bone loss and changes throughout my spine.& with radiculopathy in some places with disc narrowing and bulges - Cervical, Thoracic, and Lumbar. I have GERD, and I have ENOUGH WEIGHT on me already severe osteopenia. Osteoarthritis in my hands, inflammatory Polyarthralgia , fibromyalgia, Chronic pain, there is a lot more ....etc.... However, I have heard horror stories of necrosis of the jaw from this type of drug ---know someone who shared their story & are on surgery #10 had half their bottom jaw removed. I have enough problems ---so upping my Calcium intake supplements and seeing what my next DEXA scan says in a year.

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53

Reggie in reading diferent threads on the prolia posts the oral osteoporosis meds have long term use side effects and more investigation needed. Please consider nondrug therapy

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54

I have been on Prolia since las year. The last bone scan showed something positive. Prolia was not the first choice, there is only one other drug and its another one that's an IV and I can't think of the name, but Medicare wouldn't pay for it. Anyway, I did try Actonel and another one similar to it didn't work. Diarrhea, severe jaw pain and aches, which I didn't need more of because of the gluten intolerance and other gut issues plus fibromyalgia and chronic fatigue. Most of the Actonel and other drugs are all in the same family so they don't work.
I don't know what will happen to my bones if I can't strengthen them. I'm praying there's a better way because this drug has so many side effects and it aggravates most of my other medical conditions.

Thanks for sharing your experiences and knowledge. Glad I found this thread.

I have an appointment next month with my rheumatologist and I want to get off the Prolia.

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55

I am considering getting a prolia shot and would like to know other alternatives

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56

Hi Guest,
Just be sure you take vitamin D3 and vitamin K when you take the calcium. Without those two the calcium won't work and stay in your body.

Wishing you all the best,
Nikki

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58

Poodle,
I can't thank you enough for sharing this information with me! I go and see my rheumy next month. This gives me time to gather info to share with her.

Huge hugs!
Nikki

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60

Hi Poodle,
I looked at the side effects and I was dismayed there were so many. Do you or anyone else know of anything natural/holistic that we can use? I'm already sensitive to prescription meds anyway. I'm going to keep searching. I tried vitamin K which helped a little. I just can't see for all the damage Prolia does that we can justify its continued use.
Hugs to all!
Nikki

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63

I've just begun prolia and glad to read your post. so far a little swelling on occasion of my lip..and itching.

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64

Hi Poodle,
I asked about the Calcitonin. She was pretty meh about it. She wanted to try me on a new drug called Tymlos, you have to give yourself a shot in the stomach with it every day. The needles are so thin and little you can barely see it. BUT, it is tremendously expensive even if insurance pays for some of the medicine you're looking at over $1000 a month.
She isn't a full-fledged rheumatologist and she tried to tell me there aren't any side effects or they were minimal to Prolia. She does good on many aspects of my health care. This happens to be one I think needs rethinking. I have an appointment with my rheumatologist the next time I go in.

I want to see what he says. For the small amount of gain, I don't think the Prolia is worth it. I'm wondering what will happen if I don't take anything. If the chronic fatigue wasn't so bad I could make it to the fitness center, and do the weight machines consistently.

Anyway, the Calcitonin isn't out of the picture yet. I'll see what he says.

Hugs to you!
Nikki

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66

Poodle-you sound extreme along with others on these side effects, which I have always attributed to my osteoporosis level and living with broken forearms due to weak bones that wont heal. Idk what immogloulins are or what they are connected to Prolia for but recently I have had teeth problems. My front crown fell off so need new one to fit, but last week my back molar got loose now is throbbing like needs cavity filled. I have always had good teeth-this scares me so curious if maybe Prolia doing something? Or just old age (65)? Does Prolia get out of system if quit it? I took Fosamax over 5 years found out it never leaves system. Prolia is only thing that stabilized my bone loss. There was Forteo shots but they were liited to 2 yrs only allowed. Any help welcomed.

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67

I looked up the side effects and wrote them in the little planner I use for medical information. Then, I highlighted the ones specific to me. The Calcitonin wasn't ruled out she was reluctant to try it. I see the rheumatologist the first part of September. They are working on an oral pill for Calcitonin. It's in the second or third stages of testing. I've got the time to get the information on Calcitonin and I already have the Prolia symptoms written down. I confronted E the PA and asked her why I wasn't given Calcitonin as an option. She said it's been around for a long time but many doctors don't use it. E is normally fine as my arthritis, FMS and CFS are fairly stable at the moment. Yay! So, after my visit with her, I'm going to see the rheumatologist and see what he says. He's a great doctor and I trust him.

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69

I am a 65 year old woman in 5th stage kidney failure and on peritoneal dialysis daily. I took the prolia injection 6 weeks ago.. Since then I have had: tingling in hands and feet, jaw pain, nausea, vertigo, low magnesium, and low calcium. I had my fifth calcium infusion today. My labs came back with my BUN going from 34 to 71. I emailed my nephrologist and his reply was that prolia has probably damaged the residual kidney function and thus the BUN has gone up. I will have to increase my dialysis either in volume, number of exchanges or length of exchange. I am not taking the second injection and advising everyone I know to stay away from it.

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71

Judith (# 40) --

So sad to hear that your mother died of this poison. I hope you can do something legal against Amgen. It is criminal that they continue to sell us this horrible drug that has caused so many more serious health problems than weak bones. My condolences to you for the loss of your mom.

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73

Re: Elaine (# 70) Expand Referenced Message

It's true that the Prolia is gone but that does not mean in the least that it does not cause havoc on and in the human body. If you have not been on Prednisone before for your rash, you need it now. 10mg/day. It makes osteoporosis worse but you do need help. You can also make an appointment with a Dermatologist or an Immunologist. I would also suggest you order Nutrashield. It's a lotion the nurses in hospitals use for their hands as they have to 'alcohol' them every time they come in to see a patient. I'm not aware of it being in any stores. It also prevents diaper rash. Non-allergenic and Non-sensitizing. The Pred. will get rid of the rash and you can have it for up to one year if absolutely necessary. Most Drs. only do small packets of it so your best bet is a Rheumatologist for it. Just don't let them give you any more biologics! This should calm your skin down to 'normal'. Just don't quit it too soon or it could reappear. The longer you have Pred. in your body, the less Prolia can bother your current problem. Hopefully, it will resolve with the Pred. and the new lotion. I am so very sorry you are suffering from this. You can also use acupuncture or hypnotherapy to get rid of this skin problem. With hypnosis, the 'mind that runs our bodies' can be changed to forget you had Prolia and can change you back to before you had any inj's. of Prolia but it would take some time and a very qualified hypnotherapist of which there is not an abundance in the US. If you live near Tennessee I know an excellent one, and in Wyoming, California and Washington State too. I also know of one in Colorado but I don't know her well enough to recommend her work. Now you have some hope and choices to make. Be well~

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74

Re: Poodle (# 65) Expand Referenced Message

Hi Poodle, I always look forward to reading your posts. I asked about the Calcitonin on my last visit. My Rheumy said the Calcitonin won't help plus it isn't something easy to get anymore. I'll check into seeing if an immunologist is something Medicare will cover and continue looking for other avenues until we're offered something that will actually work. I've been reading that most people's diets are too acidic and if we try to balance it out and eat foods rich in calcium, B vitamins and other things vital to bone health along with exercise such as walking it can help.

More research is needed, in a bunch of areas.

I appreciate all the knowledge you share Poodle and everyone else here. I don't feel like I'm fighting this crap alone anymore and that helps.

Hugs to all!
Nikki

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77

Re: Daisy (# 14) Expand Referenced Message

Hi D. I am also a victim of a GP who recommended Prolia to me. It was administered to me circa 8 months ago, I received it into my belly. Since I had it I have lost all my muscles and 28 lbs in weight. I have excruciating rectum pain, especially at night or when I sit. I am extremely worried about my spine. Has anyone noticed memory loss ans confusion. Did your doc ask you to sign a disclamber? I do not trust GP's and drug companies. I spoke to a person who warned me not to touch Prolia.decause it is one big experiment . I have developed insomnia since I Received this drug which I have good reason to believe was first manufactured by the Nazi's

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79

Re: Mad Bid (# 77) Expand Referenced Message

Oh my goodness! I have not heard anyone else mention rectum pain. I get it when I have had a few no diareah days... it's like a pain pressure... but no constipation or gas or anything... thank you for sharing...

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