Denosumab and Pain: What Users Say (Page 4)

• Anonymous
• November 27, 2019

For Osteoporosis "I had a Prolia injection six weeks ago. Everything seemed fine for the first week, then the side effects began. I had severe jaw and ear pain, and new back pain as well. I have also been severely fatigued. My life has been slowed down considerably, and I deal with regular bouts of nausea. At first, I thought I was coming down with a bug, but that was not the case. I will not entertain a second injection as an option. I will be speaking with my oncologist, who insists that I take this in case my breast cancer returns and metastasizes to the bones. At this point, I am cancer-free and can’t imagine feeling this bad to be “healthy”! I am stuck with this in my body until April and can only hope that the side effects lessen."

• val...
• October 7, 2018

For Osteoporosis "My wife has very severe Prolia side effects, including at least one atypical femur fracture that is not healed despite two surgeries at UCSF within two years. She walks with a walker. 'At least' refers to the fact that she has multiple sources of pain that may be related to other bones affected by Prolia (Amgen). In June 2015, the doctor advised her that she has an elevated fracture risk and proposed to start using Prolia. He did not discuss with her the possible serious side effects, in particular, the so-called 'atypical' fracture. After the first two shots, my wife developed pain in the leg that after some time became pain and limping. At no time did the doctors consider the possibility of a Prolia side effect. She continued Prolia shots for another year (two shots). After the last shot and many doctor visits, a doctor at UCSF diagnosed the problem as an atypical fracture of the femur due to Prolia."

• Mar...
• Taken for 6 months to 1 year
• August 10, 2017

For Osteoporosis "I had my first Prolia injection in November 2016. Within a few weeks, I gained 10 lbs very rapidly, but I put it down to changing the time of taking Prednisolone meds that I am on long-term for Polymyalgia. I had the 2nd injection in May 2017, and I can only say that since then, I feel like I've been run over by a bus! I experienced bad insomnia, fatigue, neck pain, pain in upper legs, and upper arms. I also had numbness in my face, which is very annoying, especially near my eye, as it feels like something is too close to my eye! I will not take this drug again and am mad at myself that I did not check out the side effects beforehand. I took the word of my consultant that it was the greatest thing!"

• Maj...
• September 5, 2019

For Osteoporosis "3 months now after first shot, and my teeth ache and are very, very sensitive. All my labs are off the chart bad. Liver up for sure. I ache constantly now. I have had a constant sinus problem, jaw pain, teeth pain. I can’t wait until I hope this Prolia gets out of me in 3 months."

• Can...
• Taken for 6 months to 1 year
• August 30, 2018

For Osteoporosis "This is a terrible drug! Two days after my last injection, I developed a horrendous sinus infection that took ten days to clear up with an antibiotic. That was just the beginning of the nightmare though. Three months later, I still have unbelievable jaw pain that is unrelenting. The pain doesn't respond to anything, I have tried Advil, etc., but nothing works. Doctors are prescribing this because of the very aggressive pharmaceutical reps they hired specifically to sell this drug. Pharma is making a fortune from this medication. Horrible side effects, not worth it! Please do not agree to take this drug."

• mon...
• Taken for 1 to 6 months
• January 9, 2019

For Osteoporosis "I had 1 shot of Prolia Dec. 2017. I have not taken any more. My physical life has changed. Very bad pain in my back and legs. My skin dried out terribly, and I aged 5 years or more in looks. I was super active before this. Anyone reading this, do not take Prolia. It should be removed from the market. It is a wonder there are not several lawsuits to this provider drug company. They should be put out of business."

• Cha...
• April 26, 2019

For Osteoporosis "I do not recommend this drug. 10 days after receiving Prolia injection, I developed severe hip pain (both hips), excruciating lower back and pelvic pain, and extreme pain into the left groin and down the left leg. I could not weight bear. Several trips to doctors and hospital - X-rays, CT scan, ultrasound - nothing showed. Physiotherapy at the hospital said it was muscular ligaments, etc., and gave me exercises. Walking on crutches by then. After several weeks, I had an MRI revealing atypical, unexplained, spontaneous multiple pelvic fractures. Doctors and professors say it could not be the Prolia. What else caused this? Needless to say, it took months to heal, extreme pain, and loss of quality of life. The rheumatologist professor wants me to continue with Prolia. I asked him, 'What happens if this happens again?' He said to take Panadol. What hope do we have? There are new drugs on the market that work differently - Australia is way behind in treatments for osteoporosis. I will never take Prolia again!"

• Cha...
• April 26, 2019

For Osteoporosis "I do not recommend this drug. 10 days after receiving Prolia injection, I developed severe hip pain (both hips), excruciating lower back and pelvic pain, and extreme pain into the left groin and down the left leg. I could not weight bear. Several trips to doctors and hospital - X-rays, CT scan, ultrasound - nothing showed. Physiotherapy at the hospital said it was muscular ligaments, etc., and gave me exercises. Walking on crutches by then. After several weeks, I had an MRI revealing atypical, unexplained, spontaneous multiple pelvic fractures. Doctors and professors say it could not be the Prolia. What else caused this? Needless to say, it took months to heal, extreme pain, and loss of quality of life. The rheumatologist professor wants me to continue with Prolia. I asked him, 'What happens if this happens again?' He said to take Panadol. What hope do we have? There are new drugs on the market that work differently - Australia is way behind in treatments for osteoporosis. I will never take Prolia again!"

• Can...
• Taken for 1 to 6 months
• March 13, 2019

For Osteoporosis "Please do not try Prolia. I had excruciating jaw pain for 3 months after taking this drug. It was relentless pain and difficult to even go to work. I had to hold ice packs on my jaw while at the office! My doctor did not research what side effects Prolia can have and therefore didn't warn me about anything. I later read that this drug company trained and dispatched drug reps just to push this one drug alone (because they're making a fortune from it). Trust me, they don't care. My doctor told me afterwards that the drug rep laughed at him."

• Kat...
• Taken for 1 to 2 years
• October 22, 2019

For Osteoporosis "The worst thing I ever did was take this Prolia injection. I had three lots of it and will not be doing a fourth. I have the worst dental and jaw pain, resulting in many dentist trips and money spent on infection in my gums, and I'm waiting to be able to have a tooth extracted. I had the worst tooth pain, even after a root canal, the pain came back. I was never warned about these side effects of this injection by my doctor."

• Kat...
• Taken for 1 to 2 years
• May 7, 2023

For Osteoporosis "I stupidly trusted one of my doctors and took four injections of Prolia at six-month intervals. Where I had been healthy and never even thought about bone density, I soon began a great deal of pain throughout my skeletal system. Eventually, I realized that I was only feeling better just in time to receive the next injection. I quit. Although I’m no longer in constant pain and no longer have chest pains, my vertebrae are basically destroyed, and my heart calcium numbers are high. Truly, it is poison. Avoid at all costs!"

• Mel...
• Taken for 1 to 6 months
• December 6, 2018

For Osteoporosis "After one shot of Prolia, I started to have pain in my left foot and right hand. I felt like I had arthritis all over my fingers and toes. I had some dizziness. The middle of my body at my waist felt paralyzed for minutes at a time, then after a while, I could begin to move again and start to walk. Tenderness on the soles of my feet. I know that I’m not the same active person as I was before I had Prolia. I have gained over 4 lbs just in three months since I had the injection. I spend most of the day on the sofa. I continue eating very healthy, but do not move a lot so my weight continues going up. No more Prolia for me. I do not take any other medication, so it's most probably the Prolia. Well, I take vitamins and magnesium as supplements."

• Gin...
• April 24, 2023

For Osteoporosis "I had my first injection on August 22 in 2022. I started having severe muscle spasms in my toes and calves. Headaches and fatigue. Then I started having pain in the lower and upper muscles in my legs. A little at first, and it has increased to where I am in tears when this happens. I had my second injection and now, along with that, I’m waking in the night with a severe rapid heartbeat. Can’t sleep and have such bad body weakness that it just overwhelms me. I would never recommend this poison to anyone. I have had test after test and been in the hospital several times. No answers. Not thinking about Prolia being so bad, I said let’s take a look at the side effects of Prolia. There it was in print: everything that was happening to me. It also said these side effects could continue on. Prolia is supposed to stay in your body for about four months, but it can be longer."

• Ann...
• Taken for 1 to 2 years
• August 23, 2018

For Osteoporosis "Where do I start, rash on face, loss of hair at one stage, fatigue, jumping out of bed at night with severe cramps in the legs, itchiness all over, pain in the knee, pain in the joints, pain in the side of the head, pain in the feet and big toes, sick in stomach, hearing loss, general weakness, mood change very angry, frequent urinating, weight gain, breathing difficulty, aware of heart rate changing, slight soreness in the mouth nose run-off and on like sinus problem, numbness in hands and arms, I have just had my third shot wish I never did"

• ska...
• Taken for 1 to 6 months
• August 2, 2017

For Osteoporosis "My GP recommended I have this injection, replacing Evista. I've had only one injection in February 2017. About three weeks later, I had terrible ear/jaw pain and went to the doctor. She diagnosed a sinus/allergy infection and gave me meds for that. It did clear up. However, after reading more about Prolia later, I found out that one of the side effects is jaw pain. Also, since I had the injection, I have had continuous itching of the face and excessive hair loss, which I also read are side effects. I am scheduled for another injection at the end of August, but I am going to cancel and will not have another injection. I don't know what the benefits would be but don't think they are worth the irritation. Will consult again with my GP."

• Ros...
• Taken for 1 to 2 years
• April 2, 2023

For Osteoporosis "I’ve had some horror operations and haven’t been able to exercise. Then I had a hip replacement a year and a half ago. I had terrible pain in my groin and thigh, so I thought I’d get a second opinion. After all the tests the orthopedic surgeon had me do, he told me that I was missing a bone from my hip and femur, and he couldn’t help me. I’ve just read about lots of adverse problems from having Prolia. Now I think the drug is to blame. I’ll be in a wheelchair soon. I’m having awful pain. I am 77 years old. I’m not going to have the next injection."

• cbe...
• Taken for 6 months to 1 year
• August 27, 2018

For Osteoporosis "Second shot in June 2018 - terrible ringing in ears now, jaw pain, sinus pain, night leg cramps, insomnia, bleeding in eyes. Not going to have any more shots! Regret like mad that I ever agreed to this."

• sea...
• Taken for 6 months to 1 year
• January 15, 2019

For Osteoporosis "After one injection, if there was pain, I did not feel it. I already had chronic pain and was taking meds. Right after the second one, I had a bad skin outbreak, and my doctor could not explain why, along with terrible itching. The last injection was six months ago, and I noticed bone growth in my upper palate. My doctor stopped Prolia because of more side effects. I have seen my dentist and doctor. I would never recommend this drug for anyone."

• sam...
• Taken for 1 to 6 months
• August 5, 2018

For Osteoporosis "My doctor recommended Prolia, noting that it is a drug that can actually reverse osteoporosis. Unfortunately, I did not carefully review all the literature concerning Prolia before the first injection. Prior to injection, I had a lot of arm muscle and joint pain due to lupus. I also had leg pain. Within 2-3 weeks following the injection, I started having severe arm muscle pain and also leg pain. My knees started to bother me, and one knee got really swollen. It is very hard in the mornings-painful to move my arms and painful to walk. I have also had increased pain in my hands/feet and some neck/jaw pain. In general, this has been horrible. I will not take this drug again."

• sam...
• Taken for 1 to 6 months
• August 5, 2018

For Osteoporosis "My doctor recommended Prolia, noting that it is a drug that can actually reverse osteoporosis. Unfortunately, I did not carefully review all the literature concerning Prolia before the first injection. Prior to injection, I had a lot of arm muscle and joint pain due to lupus. I also had leg pain. Within 2-3 weeks following the injection, I started having severe arm muscle pain and also leg pain. My knees started to bother me, and one knee got really swollen. It is very hard in the mornings-painful to move my arms and painful to walk. I have also had increased pain in my hands/feet and some neck/jaw pain. In general, this has been horrible. I will not take this drug again."

• PAM...
• Taken for 1 to 2 years
• August 3, 2018

For Osteoporosis "Shot number 2 gave me severe abdominal pain, bloating, IBS, and pain in my jaw, arms, and legs. I also had dizziness. Then shot number 3 - my last shot - put me in the hospital with colitis, jaw pain, dizziness, and mucus and blood flowing from my butt. The list of horrors goes on! Prolia is dangerous!"

• bon...
• Taken for 1 to 6 months
• July 16, 2017

For Osteoporosis "Received 1st Prolia shot on May 15th. Went to the doctor on July 14th to find out why my upper legs hurt so bad. X-rays didn't show anything, so I was being referred to physical therapy to see if that would help. And then I saw a commercial about Prolia with one of the side effects being leg pain! Unbelievable, I thought. Have some of the other side effects too. Urgent urination and rapid weight gain. I should have googled side effects before having the shot. No more shots for me."

• SDa...
• March 2, 2019

For Osteoporosis "Just read a recent comment listing weight loss and stomach pain as Prolia side effects. I have received two Prolia injections and the third one will be in May. For the last four weeks, my constipation problem has gone from bothersome to severe, and I have chronic lower abdominal and pelvic pain. In addition to the Prolia, I also began taking Repatha for my high LDL cholesterol. It had been high for many years, and interestingly after starting Prolia, it went higher, and the ratio of HDL:LDL altered negatively. In addition, I have a loss of appetite and weight loss. My family physician chalks all of this up to my irritable bowel, but I know my body and something else is going on. I have read that these rank ligand receptors that Prolia targets exist not just on bone but in other areas like the small and large bowel. Will call the endocrinologist on Monday. Would be very interested to hear from others who have experienced debilitating GI issues, specifically worsening constipation."

• Jef...
• Taken for 1 to 6 months
• February 8, 2020

For Osteolytic Bone Metastases of Solid Tumors "I just had my third dose of Xgeva, I have them monthly for metastatic breast cancer. The first two times I had some lower back pain and minor aches and just feeling yucky for 24 hours. I had my third shot yesterday. I woke up after midnight in a lot of pain. My bones, muscles, and joints hurt. I was able to fall back to sleep but felt awful the next day and had more localized pain where my cancer is. When I related this to my doctor's nurse, she was surprised because she had never heard of this. I've read quite a few reviews of other patients experiencing the same thing. I'm uncertain as to continue taking this medication."

• Anonymous
• Taken for 2 to 5 years
• December 4, 2022

For Osteoporosis "I can't believe insurance allows this drug to be administered. I had 2 strokes while I was on this, and also everything it said could go wrong, it did. I think this stuff is a death sentence. I am not taking it anymore. The pain of this wakes me up at any time of the night. I even passed out one morning and vomited and had to go to the hospital. Also, I live alone. I will take my chances on not taking it and take my calcium. Triple shame on Amgen."