Prolia Side Effects Ongoing (Page 8)

I had my infusion Mar 4 2015. I have experienced severe stomach pains, leg pains that wake me up at night, a horrible dry cough, near migraine type headaches, very severe weakness, trouble walking, constipation, had to have dental work that I usually have great teeth, some trouble sleeping. My rheumatologist did nothing to try to help me with the symptoms but my primary doctor gave me medication that help with the stomach pains, take Excedrin for Migraines and enteric aspirin for back and body, and other meds to try and find some comfort. I'm somewhat better than the few weeks after the infusion but still have a lot of problems. Hopefully this doesn't last for 6 months.

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Hi pood-
Can you tell me what kind if support or help to ask an immunologist for with respect to my ongoing Prolia side effects? I have read your notes for the past 8 months and am thinking and hoping I might get some support from an immunologist. I jtst don't know how to move forward. I reacted terrible to the Prolia- severe itching and rash was crazy in the beginning. Now it comes and goes. Pain in bones and muscle, sjogrens, uti, upper respiratory infections, rib pain, shallow breathing, gluten sensitivity, hair loss, weak muscles, gerd, cramps, tingling in hands and feet, ringing in ears...fatigue and sleeplessness... I had rapid weight gain of 35 lbs at first but that weight is coming off. Thank you! Jan

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So it is now March 2017-
Where do you stand in your healing from prolia status?

I am January 2016 prolia infusion. 15 months post prolia. I have your symptoms continuing now plus a few more. Sometimes they seem to cycle through periods of flare ups.
Recently I broke out in yet another rash that is going nuts. Have a dermatology appt in 2. Days.

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I totally agree with you. A medication that is supposed to help you gain bone density but at the same time destroys your calcium...what does it mean? A medication that supposedly “helps” your bones but at the same time causes osteonecrosis (bone death)... How can someone explain that? This medication should never be taken by someone who had cancer. It literally gets rid of he T-Killer cells, the frontline of protection that our immune system has against cancer!!!!! It may also cause cataracts, how do you like it?

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I have posted here in the past. I developed a tumor made of bone material over my right eye where the eyebrow meets the nose. This after taking two doses of Prolia. It grew larger after the second dose. I was terrified and made the rounds of specialists including Mayo Clinic. No one would go so far as to connect the tumor with the Prolia but all said "probably the cause." I recently saw my regular rheumy who is a research doctor. She informed me that they are just now recording numbers of patients who are developing bone-mass tumors under their tongues (lower palate.) My "eyebrow" tumor could have started from an injury to the area over my eye. She confirmed my guess that Prolia will deposit wild bone matter at the site of a previous injury to bone...if the Prolia decides to repair that injury. They are preparing reports on it on.

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I have received 2 doses of Prolia. My lips are numb and my face feels swollen. I will never take Prolia again. It has been 2 months from my last injection and still have the side effects. Anyone get these side effects?

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I have been on Forteo and have had no problems other that the aggravation of having to give myself shots everyday. I have been trying to decide if I want to take Prolia so I wont have to have an injection every day. My rheumatologist told me that she would prescribe it for me. Reading all the side effects and the percentage of probability of symptoms I am not sure this is a wise decision. Has anyone else taken Forteo and changed to Prolia? I have severe Osteoporosis and need treatment. Any advice would be greatly appreciated.

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I had one injection of prolia and wound up with a pretty severe allergic reaction. Skin rashes and hives mainly on my neck and stomach and my throat was extremely irritated. Three months after prolia a fleshy growth appeared on the side of my nose. I go to an ENT physician who injects it with a steroid. It returns every 3-4 months so I continue with the steroid injections. I have alerted the prolia manufacturers about this. I haven't had
another injection since March 2016 and just take daily calcium supplements. I have severe osteoporosis due to early menapause and my physician says there are new medicines coming out this summer and wants me back on medication of some type in the fall. I am very nervous. Is there anything safe and reliable without all of these ugly negative side effects?

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Daisy, after reading about your tumor by your eyebrow where a prior injury existed, I also have that same type of lump coming up on my nose... for the 4th time. Years ago I broke my nose and had two surgeries to repair a deviated septum. I believe that prolia is depositing this fleshy substance to compensate for bone loss in my nose. My ENT physician believes the same.
As I mentioned in my previous post, I reported this and my side effects to Amgen.
Stay away from Prolia!

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Jan~what worked for me may not work for you since you have more problems with Prolia than I did. Mine was a severe weight loss--to the point they were very, very worried about it. I did get a cataract too and had it removed after the 6 months were up. Lost two teeth to Prolia and just recently got the implants put in. Please do go to an Immunologist to get help. They know how to counteract many of the Prolia problems. I recently found the secret to the hair loss from Prolia -- Saw Palmetto, B vitamins and also vitamin A. Many women reported their hair much better with just the Saw Palmetto but I seriously doubt they were on Prolia. Be well~

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Not worth it to me. I don't want to have suffer like this and miss my daily life. No more shots for me.

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Thanks poodle for the nice note. I have to say Prolia did a number on my immune system. Anything I was sensitive to got severe and things I had no issue with became a problem. I am a blend of many Prolia survivors who post here... as is everyone else who lists here.. commonalities are so interesting and it has been and continued to be helpful to read and post here. My biggest error was not complaining loud enough.., I just wanted to survive. Symptoms now at almost 19 months post Prolia continue to lessen- pain, digestion, pulmonary cincerns, energy, emotional stress... hair and nail and skin issues... sun and food intolerances... now am dealing with gums and teeth- saw a specialist who says Prolia continues to be a dental risk for up to 5 years... I was a young, healthy and active 57 year old when I had Prolia- now I am an OLD 59 year old trying to make it though each day with the hopes of improved health on the immediate horizon. Pretty crazy! Going to Mayo Clinic was the best thing I did to coordinate my care. And joining and posting on this site was as well. I have learned much and found some relief from suggestions here. We all need one another to not feel alone and to get support and ideas... much love and hope to everyone who is a Prolia survivor! Hugs... Jan

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prolia injection 6 weeks ago - miserable, nasty drug - exhausted, back pain, headache. I just hope it wears off quickly

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Went to Dentisr yesterday. All bottom teeth has got to come out, All the bone is about gone so the teeth are lose. Have a Leason (Sore) on my bottom gums that want heal. Has been cut out once , now back neurosurgeon will cut out and send to Lab.

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It's called Endocarditis! Prolia can cause inflammation of the inner lining of heart, caused by infection. It is disclosed on the Prolia website.

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Re: Verwon (# 1)

My lastest update. Had my first shot July 7th 2017 and was whacked with a host of side effects. At this point i still have severe lower back pain, skin issues, and still feel fatigued. I am better than a month ago. Still i won't have another prolia shot it was to difficult to take me out of my life and still not be able to do my schedule to the fullest. I push myself just to get things done.

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Re: Poodle (# 6)

Had my injection on june 22017.Still have bad lower back pain and muscle spasms. Still on med for pain and now a med for the muscle pain. My hair has slowed down from falling out. Gastric problems ongoing.

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Re: Andie (# 148)

Thank you for posting. Yes...your reactions is very similar to mine. I refuse to take any bone density meds going forward as they all do some damage. My rheumy recently confessed that there is a study going on right now involving a number of people who have developed boney "plates" under their tongues after taking Prolia. Because my boney tumor is over my eyebrow/nose there is not enough victims with my type/location of tumor.

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Re: Janet (# 151)

Can you tell me how many infusions you had? Or how long you were on that crap "medicine"? My wife was taking Fosamax, (bisphophonate drug) for two months, and was having pain in ankles, knees, and hips. They talked us into an infusion of Prolia, another (bisphophonate drug) in May of 2017. My GOD, the woman went to the ground. Swollen ankles the size of a softball, swollen knees, back pain, shoulder pain, hip pain, had to buy her a cane. I had to help her walk, depression, loss of appetite, loss of smell, and taste. This is Oct. 2017, the inflammation on the ankles are gone, so is the pain, inflammation around the knees are gone, mild pain, but the pain in the hips, and back have now moved to the shoulder and upper arms. Two months ago, we rushed her to the ER we thought she was having a heart attack. It wasn't, now it appears it's effected her Thyroid. Will never ever have another injection of that crap.

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Re: Shirl (# 2)

Hi,i had my last shot Jan 2017,i have skin rash,lower back pain and chronic uti since my first shot.i'm sorry you too are suffering but know yoyr not alone.

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Re: teddt (# 158)

So sorry to hear what you are going through. I had two injections..six months apart. After about a year the bone tumor stopped growing.But I dare not take another bone med as the tumor flares up.

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