Generic Name: Denosumab for Osteoporosis (denosumab)
Prolia (denosumab) "I have suffered from severe right hip and thigh pain and lower lumbar pain since I started Prolia injections in August 2020 for Osteopenia (following 6 consecutive fractures). The pain from my lower back, hip, and thigh is truly debilitating. I have a throbbing sensation which comes and goes. It is always worse as soon as I've had my injection. I'm now looking at ways to stop taking this medication. It is just the worst feeling in the world to be so reliant on a drug which makes me feel so utterly immobile and in constant pain. I'm 55 years old and have been told I will need to be on this drug for the rest of my life. I will not be doing that. Absolutely no way! My last injection was my last. People, PLEASE avoid this drug at all costs."
Prolia (denosumab) "Density went from -1.2 to -2.8 in 2 years because of taking steroids for 2 years. Prior to Prolia, started weight-bearing exercise regime to intensify bone building and planned to continue after taking the drug. I can't because of pain! Fingers, thumb, and wrist, shoulders, shoulder blades, right groin, hips, and pelvic area with the worst in back and neck. Muscle soreness in biceps and thighs. Jaw pain for a month. Weakness in legs, arms, and hands. Major stiffness after short time sitting. Back cracks when I stand up, bend over, or stretch. Hearing loss, fatigue, and now take meds for insomnia. I was active: went to the gym, out with friends, walked 2 miles/day. No more. I awaken in the morning and can barely move. I'm depressed because of my situation. I had none of these issues prior to taking this drug! Common denominator and cause = Prolia! This drug is poison and shame on the FDA. The makers of Prolia have put aside billions of dollars for lawsuits. Hmm, wonder why. I will not take my next injection despite what my doc advises. My whole life has been turned upside down."
Prolia (denosumab) "I had my first Prolia injection in June 2016. I have since had 9 injections. I did not relate the severe muscle soreness, joint and bone pain to the drug. I was fit and healthy prior to taking the drug, walking regularly, swimming and lifting weights. Now my life has been ruined. I have difficulty functioning on a daily basis. Simple tasks like getting out of bed, in and out of a chair, in and out of a car, getting dressed and undressed are painful. My strength has decreased alarmingly. I researched the side effects of Prolia, the only drug I was taking. I couldn't believe my eyes. The drug that was supposed to be enhancing my life was destroying my life. The sad thing is a bone-density scan revealed that my bone density had not improved. All the technician could say was that 'it had not become any worse'. I will not be taking Prolia or any other drug again. I will increase the foods in my diet that have high calcium levels and continue to take Calcium and vitamin D and K2."
Prolia (denosumab) "Prolia, for me, it was a nightmare. With my first injection, I had problems in my jaw. My second injection was in early 2020, Covid time. In March, while walking, I noticed shortness of breath. Scary. Later, developed a lingering Upper Respiratory Infection. Then came heart palpitations. Three ENTs said it was GERD. I developed no voice, a sore and swollen throat, and difficulty eating. Sinus issues also. So many tests, and many of the doctors indicated possible side effects from the drug. Here it is August, and I'm still suffering. The company just said sorry and did indicate some of the side effects on the list. I am still on meds and hoping my problems disappear and they are not permanent. Over 100 amoxicillin pills, and months of pantoprazole and dozens of other meds. I hope there is a class-action suit for this med or a black box warning."
Prolia (denosumab) "I had one, and only one, injection of Prolia. The day after, as I was sitting at the computer, I began having severe chest pains that radiated up to my jaw. Needless to say, I thought I was having a heart attack. I took an aspirin, unlocked my doors in case I had to call 911, and in about 50 minutes, the pain subsided. A couple of weeks later, I had a routine appointment with my cardiologist and was talking with the PA. She told me that her aunt had exactly the same reaction after her first, and only shot. I refused the second shot and will never have another. Nor will I have a bone density test as I refuse to take medication anyway."
Prolia (denosumab) "In October 2019, I received my second injection of Prolia. I never researched any side effects. All I know is that since the time after my first injection, I have been feeling terrible, but sadly, never related it to this Prolia injection. After my second injection, I started feeling much worse with extreme pain in back and legs. Lots of severe digestive problems and night sweats, also extremely exhausted and to the point that all I want to do is stay in bed. That is when I started researching the only new drug I took since my first injection in April 2019! My eyes were opened, and I will never take any drug again my doctor recommends without researching possible side effects. I will never take Prolia again and only hope that these horrible side effects will stop after this drug should be out of my system in April 2020. Thanks for reading and be aware!"
Prolia (denosumab) "The Prolia side effects are real and devastating. My rapid heart rate is out of control. This is dangerous. Not only will I never ever take this drug again, nor will I go to the bone specialist again. The skin rashes, the gut problems, vision loss. So much more! I called Prolia support line. Guess what? No support!"
Prolia (denosumab) "I had my first injection in Aug 2019. I’ve had joint stiffness and muscle aches daily. I’ve also noticed my legs have gotten so weak! When I walk down stairs, I have to hold onto the railing for dear life, in case my legs collapse. I’m 58 years old but I feel like I’m 75. I just had my second shot yesterday and a few hours after I had it, I suddenly felt a horrible sharp pain in my lower leg that felt like a spasm, and it quickly spread down into my foot and then my foot became totally numb. I’ve never ever had this happen to me before, but the nurse believes it’s not related to the Prolia. I’m convinced that it is."
Prolia (denosumab) "I have severe osteoporosis. Years ago, my GP suggested I take Prolia, so I did research and refused the treatment. I am handicapped due to a spinal fusion done 25 years ago, where the spinal cord was damaged. Nonetheless, I have been active, walking with two canes and doing aquafit. Now, the GP is strongly suggesting Prolia again, and sending me to a specialist. I'm diligent with the research, and I sincerely thank everyone who wrote on this forum. It is useful. If I were to have any side effects, it would immobilize me. I am leaning towards rejecting Prolia again."
Prolia (denosumab) "Had my first Prolia injection in Feb 2020. Two to three days later, upper abdominal swelling, indigestion, and reflux occurred. This was followed by blisters, and my whole back peeled. Subsequently, aches and pains in lower back, hip, groin, and knee emerged. Additionally, my hair started falling out, and my osteoarthritis in my hands flared up with reddening of the skin. I also experienced constipation like never before, and after 8 weeks, I gained 6kg. Blood tests revealed elevated levels of the parathyroid hormone, which were 2.7 and increased to 9.7, surpassing the normal range. My cholesterol went up, and vitamin B levels dropped to low. It has been a road of misery. I have visited doctors weekly and an endocrinologist, but there seems to be nothing that can be done except waiting for it to slowly leave my system. I am utterly depressed with mood swings. I rate this experience a zero and will not be opting for another injection of Prolia again. ☹️"
Prolia (denosumab) "Both my grandmother and my mother took this medication and it harmed their health. Caused cracked teeth, widespread joint and bone pain, and increased fatigue. It is supposed to help remineralize your bones but it appears to leech the calcium elsewhere in the body. My mom got such horrible cramps in her calves, it was pathetic. Both of them stopped the medication and they are still having side effects years later. This is poison."
Prolia (denosumab) "I took two shots of Prolia in Jan and June of 2019. Did not connect the side effects until way late as you don't think of any being due to Prolia. I belatedly read that it's made from genetically engineered Chinese hamster ovary cells (!) and has tons of bad side effects that doctors ignore. Am looking for unbiased (from doctors or drug company) website where affected people can help each other. I notice that the few people here saying they have no problem with Prolia have high marks of approval, yet all the others who are hurting have very low. Makes one wonder who is monitoring this site ☹️"
Prolia (denosumab) "This drug was recommended by the endocrinologist. Only took the first dose. Although it slowed bone loss in the body, it impaired the bone growth in the jawbone and also caused cancer to grow in the jawbone. After visiting the dentist, I was educated about drugs like this. I hope before anyone takes this drug or any similar medication, speak to your dentist."
Prolia (denosumab) "I don't know what to think about this medication. I've been using it for 1 year now. I don't sleep due to the bone pain. My shoulders, elbows, and hips are causing excruciating joint pain, especially at rest."
Prolia (denosumab) "Had my first Prolia injection in Dec 2019. Within 10 days had severe rolling pain throughout my body. Would go on for hours at a time. It would hit my toes, shins, top of foot, bottom of foot, abdomen, thigh, groin, knees. No energy. Difficulty getting out of chair and walking. Since it is a 6-month injection, it takes time to get out of your body. It is now Feb 21, 2020. I am still having difficulty walking and so painful getting out of chair. Pain is intermittent and can hit any part of your body at any time. Have to take pain meds and muscle relaxer to get through the night. Will never take another injection. Do not know what drug to take next because if I don't take a drug for bones, I will have fractures of the spinal column. I have never had a fracture in my life."
Prolia (denosumab) "I had one shot of Prolia on July 19, went through 6 months of nightmarish symptoms. Bone pain, jaw pain, even my teeth ached and have moved. I now have a gap in my teeth and they're chipping, my hair started to fall out, skin allergies, which I've never had. I am usually fit and healthy but never felt so sick after having Prolia. I'm so scared of rebound vertebrae fractures I'm taking a bisphosphonate as a relay drug. After that I'll never take an osteoporosis drug again."
Prolia (denosumab) "I took Prolia for 3 years. I didn't have any side effects until my 6th and last shot. The day I received my shot, my gums started bleeding, and I've had a bad taste in my mouth that I can't get rid of. I've since stopped taking the shot. I'm very disappointed in not being informed that you can't stop taking this drug!"
Prolia (denosumab) "I had my first shot in January 2020. The pain in my back and knee has increased unbearably within 24 hours and I now also have night sweats, hip pain, aching joints and intermittent pain in my groin. I also struggle to climb stairs and get up from seated position and to get out of bed. I am sore and fatigued and irritable all day. I am not enjoying my food. Often experience pins and needles in hands and feet and inexplicable sensations in limbs. Cramping easily. Ruined my walking regime. My next shot is scheduled for July. I won't be having it."
Prolia (denosumab) "I had 4 Prolia shots every six months. I started having arm pain. Then the last shot in October 2018 left me with an arm I could not lift and extreme arm pain. I did physical therapy, which helped a little. But it has been over a year, and I have daily pain. The doctor insists it wasn’t the shot that left me with terrible osteoarthritis of my arm. It didn’t happen until the shot. I wish I had researched it more, and I wouldn’t have daily pain from taking Prolia. Don’t take it!"
Prolia (denosumab) "1st Prolia shot on 12/24/19. About 2 weeks later, I started having headaches that lasted all day, every day, and I rarely get headaches. On 1/22/20, I had a strange episode where, in conversation with a friend, I couldn't get my words out and I got very agitated and nervous. Ten minutes later, I was struck with a severe headache accompanied by a visual disturbance: bubble-like things in both my eyes. Couldn't see. Bubbles went away after 10 minutes but I still had a blazing headache. Went to my doctor several days later. My blood pressure was very high, and I have always had low BP. She thought I might have had a TIA. The headaches continued. Went to my cardiologist because of the high BP; told her I thought it was possible this was all a result of the Prolia. She agreed. On 2/13/20, I had another episode where I got dizzy & started seeing lines in both eyes & couldn't see. Went to the ER. My BP was exceedingly high and my head hurt so badly that only intravenous pain meds helped."
Prolia (denosumab) "I have a BRCA2 mutation, so my doctor prescribed Prolia to offset the bone loss caused by the AI I was prescribed to reduce my risk of breast cancer. After the third shot, I started having muscle and bone pain in my leg that was so severe I could hardly walk. My doctor said it was not the Prolia causing it, and she administered a fourth shot. That was July 2020. Since then, the pain has gotten much worse. I stopped my AI in October, so Prolia is the only med I am on. The pain can be mild to so severe, I am in tears. I was an active, healthy person before Prolia. Now I can barely walk. I have joined a Facebook group with over 3,000 women having similar and worse side effects. This drug is awful. I have reported to my doctor, the FDA, and Amgen, but no one has any suggestions to alleviate the horrible side effects. This drug should be removed from the market."
Prolia (denosumab) "I had 3 injections of Prolia in the last 2 years and really nothing that I have read has happened to me. Yesterday, I had my appointment with my oncologist, and she told me that after reviewing my bone density results, I don't need the 4th dose of Prolia. My bones are in excellent condition. I had no side effects at all."
Prolia (denosumab) "The side effects of the medicine made me opt out of taking the 2nd injection. Severe bone pain in the legs, back, and hip along with a bladder infection caused me to be on antibiotics for months, leaving me feeling very poorly. I also experienced a change in bowel habits as well as a loss of appetite. Twenty-eight pounds were lost very quickly."
Prolia (denosumab) "My mom had been on Prolia for 5 years with one year of missed doses in the middle of it due to Covid and the doctor retiring as well. In total, 8 doses. She had foot pain after the 7th dose and could barely walk, and also got sepsis after the 7th injection. She survived sepsis and got her 8th injection 2 months after her sepsis, and on the day of her 8th injection, she got a parotid infection within a couple of hours, and she passed away 2 weeks later. I believe the doctor never should have given her the last injection as she was in sepsis recovery. She had a very low immune system afterward. There's a black box warning not to give if on immunosuppressive medicine, but the warning should also include not to give if a low immune system from a recent severe infection. Also, a low rating as you can't just stop Prolia due to rebound fractures and have to go on a rebound drug until bone turnover is good."
Prolia (denosumab) "I did not correlate the sudden pain in my jaw, molar, neck, backbones, and joints to the Prolia injections till these symptoms were repeated whenever I got the Prolia injection. It feels as if my own bones are sucked out of me and replaced with Prolia. I went through three injections already, unfortunately. It seems that I can't go back to where I was before Prolia as the pain gets worse signaling to take the next injection. I never experienced this pain before Prolia. It makes you completely dependent on Prolia. The saddest part is the pain gets even worse after each injection. I would not recommend anyone go through this."
Prolia, Xgeva, Jubbonti, Wyost
Prolia, Xgeva
