Prolia

USER REVIEWS

Comment from: Eleanor Hill 75 or over Transgender less than 1 month Caregiver Published: September 30

after prolia injection, had so much pain in arms, legs and fingers, now back pain and other arm pain, terrible pain, cannot get out of bed, cannot rollover arms hurt so much really unbearable pain in arms and fingers, I would never never take this drug ever again, I had no problems walking or running now can hardly walk, slide my feet alone, the worst ever drug, get it off the market, join the lawsuits so you can make sure this drug is taken off the market.

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Comment from: Kaye Mckee 55-64 Transgender 1 to 6 months Caregiver Published: September 27

I took the shot Prolia, last year, had to have my calcium level checked. It was fine. I didn't listen to my gut feeling saying don't take that shot. 3 weeks later after taking it. I had a stroke, I was in very critical condition.My brain was bleeding, I was on the ventilate for 15 days. Had to have surgery to remove the blood in my brain, they had to put a shunt in to drain the blood off of my brain. Had a heart attack. One of the Doctors told them to check my calcium. I didn't have any, the shot took it all away. I will never take another one. I am also deaf in my left ear. My short term memory sucks. My balance is off a lot of the time. I am so blessed though that I can walk and get around. My advice to anyone if something is nagging you not to do it, dont take it. I know every one I different and it may not effect you. But for me I will just stick to my Calcium vitamin.

Related Reading: prolia | stroke | heart attack

Comment from: Prolia 65-74 Transgender less than 1 month Caregiver Published: September 08

I took Prolia Jan 2019 due to advanced osto . when they say it will cure you or kill you. Prolia side effects for me just made me wish I was dead. every side effect from prolia I got severe stomach problems drs tested for everything after 1 year when prolia wore off stomach is fine. the best yet 5 cracked vertebrae side effect. If you want to play Russian roulette with prolia good luck.I am much worse off after prolia. prolia should be taken off the market.we tried a new osteo dr who told us all drugs have some side effects. do your research before trying any of the injectable drugs for oesto

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Comment from: Deb 55-64 Transgender less than 1 month Caregiver Published: August 23

I had my first and only shot on August 4 2021....sever lower back pain and pain in arms and legs. I was never told that you just can't stop this drug! Now I have to go on a rebound drug in February when Prolia wears off or could risk spine fractures. I thought I did my homework but put to much faith into my Drs. advice. I do know of many women who take Prolia and are doing very well. I will not get another shot. I should of never been given Prolia. Please do your homework and reach out to others who can share their experience. We all react differently to drugs so what works for others may not work for you. If i could turn back the clock I would of NEVER gotten this drug. Now its a 6 month wait before I can start and relay drug and who knows what kind of side effects I will get from that. Good Luck to all...I hope this helps!!

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Comment from: D Lovett 65-74 Transgender 2 to less than 5 years Caregiver Published: July 13

Have been on Prolia for several yrs now. No side effects & very good dexa scans as a result. No longer in osteoporosis range. I’m an active 73 yrs old w/various (medically managed)health conditions. I’m very grateful for this treatment.

Related Reading: prolia | osteoporosis | treatment

Comment from: Kathy 65-74 Transgender Caregiver Published: June 25

I developed Osteonecrosis of the jaw which means Bone Death. I have had to have bone removed from my upper jaw which has left a huge gap and I have teeth that have broken off. Medicare will not cover this and I have to have teeth surgically removed by an oral surgeon. The bone cannot be touched; therefore I cannot get implants nor dentures on my top teeth. I am having a bottom one removed this week so which could again result in losing the bone in my bottom jaw. Not only do I have to pay the very high oral surgeon fees but I have to do without teeth. This is so embarrassing not to mention painful. Please take this into consideration. According to my oral surgeon and my dentist, there are more and more people coming in with this problem. It is not as rare as they make it out to be and there is NO cure nor is there any way to tell that you have it until something affects the bone as in tooth removal.

Comment from: Antoinette 65-74 Transgender 6 months to less than 1 year Caregiver Published: June 04

All my bones ache from my hips to my toes , Couldn’t walk for a few days, rash, itchiness on my body, hair loss , Dry mouth, urine infection, red spots on my body. This medication is poison it should be banned I have been on it for 12 months and have not gotten any better with my side-effects. It’s terrible.

Related Reading: hair loss | dry mouth

Comment from: Nana 65-74 Transgender 5 to less than 10 years Caregiver Published: May 20

I'm 69 and I started getting Prolia after a diagnosis of severe osteoporosis of the spine 5 years ago. I haven't had any side effects that I can recall and now my spine has filled in. It's worked for me.

Related Reading: prolia | osteoporosis

Comment from: Donna Waters 55-64 Transgender 1 to 6 months Caregiver Published: April 16

This is a bad drug. It made me sick for 7+months. Leg pains, headaches, broken teeth, flu like symptoms that last weeks at a time.

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Comment from: Staticsis2 55-64 Female 1 to 6 months Patient Published: April 06

After intial dose, fatigue increased, nauseated, major flatuence and now a purple hue all over my stomach some 5 months later. Trying to check into doing pellet injections instead which are all natural as I have heard to many things about this drug including dental issues.

Related Reading: fatigue

Comment from: Jmsty 75 or over Female less than 1 month Patient Published: March 07

I took my first shot about 2 weeks ago. Immediately woke up every hour that night with severe leg cramps.. That lasted for 4 days. I had severe hip pain (where my osteoporosis is bad. I also ended up calling 911 when my blood pressure dropped down so low. I was dizzy for the whole week. It has since all worked itself out except for my blood pressure. Still havenâ??t got that back to normal. Iâ??m not sure if I will be doing this again. Not sure if itâ??s worth it.

Related Reading: hip pain | osteoporosis

Comment from: Sam 75 or over Female 1 to 6 months Patient Published: February 05

Did anyone get Burning Mouth Syndrome? I felt like I had just had some turpentine the minute I had the injection, not that I've ever had turpentine! I did not have a second shot. The BMS still comes and goes.

Related Reading: burning mouth syndrome

Comment from: BeeGee 65-74 Female 1 to less than 2 years Patient Published: January 01

I had previously taken Boniva for several years, but my doctor switched me to Prolia two years ago after my t-scores got worse. After three shots, six months apart, my lumbar spine score improved from osteopenia range to normal range, and three of my four femur and femoral neck scores improved from osteoporosis range to osteopenia range. I also take calcium and D supplements as directed by my doctor, and do weight bearing exercise daily. The side effect I have experienced is a noticeable stiffness and discomfort in my lower spine when I arise in the morning. My feeling is that it is due to lack of movement all night, because it can also be brought on by sitting in the same position for long periods of time. Application of a heating pad provides moderate relief. I can tolerate this side effect because I find that faithfully doing 45-60 minutes of yoga or mat pilates soon after rising tremendously improves my flexibility and comfort. If I do this daily, I feel pretty normal the balance of each day and evening. I highly recommend this strategy for dealing with this particular side effect. If you have not done yoga or mat pilates before, there are good videos online available to start you out with gentle movements that stretch and twist your spine in a safe way. Really, this "working out" of my spine has been such a help with this problem!

Related Reading: boniva | prolia | osteopenia

QUESTION

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Comment from: Glo 55-64 Female less than 1 month Patient Published: December 25

This drug is horrible. I wish I had never take. It. It has been 12 days and I live 24/7 with a vertigo type dizziness, blurred vision, nausea, I am hungry but cant really eat and the muscle pain gets worse by the day. I feel often times like I am about to throw up. It is just horrible. Dr and I may try Fosomax next as I have done 2 yrs with Forteo already. Do yourself a favor and find an alternative drug if you are able.

Related Reading: dizziness | muscle pain | forteo

Comment from: Informed 65-74 Female 2 to less than 5 years Patient Published: December 17

I have taken this drug for several years and have had so much hip and back pain I had to start going to a pain clinic having steroid injections and physical therapy. I was hearing a commercial about this drug and told my doctor that I was going to try to stop for a while and it has been amazing how much my pain has got less and less. Sorry will never take again!!

Comment from: big 65-74 Female 2 to less than 5 years Patient Published: October 29

I was already living with an autoimmune disease .I had pain and fatigue. I have been taking prolia for 4 1/2 yrs. Some shots were ok ... some i had increase pain and headaches lasting about 2 weeks. This time has been a lot worse.Took prolia 9 weeks ago and have pain from the minute i wake up till I fall asleep. Muscle and bone pain!Much worse ...I would tell ANYONE to please check out the stories ... I would NEVER take it again!!!

Related Reading: fatigue | prolia

Comment from: Disillusioned 65-74 Female Patient Published: October 24

I had my first Prolia injection in June 2016. I have since had 9 injections. I did not relate the severe muscle pain, 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, as I knew it, 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.

Related Reading: prolia | muscle pain

Comment from: Elaine 45-54 Female 5 to less than 10 years Patient Published: October 02

I've had 12 shots over six years, with my first at age 42. The first four years were great, I had no side effects, and my spine went from -4.1 to -2.3 and hip -1.8 to -1.0. then I had an accident in 2018 and injured both tibia bones. Two years later they still have not healed. MRIs show stress reactions on both sides anterior mid tibia in the exact place where my injury occured. The pain has become nearly intolerable at times and has required orthopedic devices at times to ambulate. I am normally very active, being a dancer. I also hike, canoe, snowshoe, cycle/mountain bike. I have had to slow way down with activity over the last few years because my bones will not heal. Prolia affects the bone remodeling process. This is something to consider when taking this drug. All will seem fine until you suffer an injury of bones. I am also now aware of the need to go on another drug if I choose to come off Prolia (or insurance stops covering) as there is a significant increased risk of rebound fractures and dramatic drop in bone density within the first year of stopping Prolia. I am only 48 years old and I fear my future. I have done everything imaginable trying to heal my tibia bones to no avail (diet, supplements, PT, acupuncture, rest, HRT, you name it). My shins are constantly tender and sore and it is hard to even walk two blocks, which is disconcerting considering I used to walk 10 to 15 miles in a day no problem. I feel ambiguous about my improved DEXA score, given my lowered quality of life, and no other explanation for why my tibia bones will not heal. I am otherwise healthy with no diseases. This drug should be reserved for those at very high risk of fracture, and never used as a preventative.

Related Reading: stress | prolia

Comment from: Samantha 65-74 Female 5 to less than 10 years Patient Published: September 03

I have been taking the Prolia Shot for 5 years now and have moved out of Osteoporosis to Osteopenia without ANY side effects. Prior to this treatment I had a terrible time trying several other drugs to treat Osteo. I am so thankful Prolia has worked great for me.

Related Reading: prolia | osteoporosis | osteopenia

Comment from: PharmHel 65-74 Female 1 to less than 2 years Caregiver Published: June 27

I am leaving this review for a relative who, after her third dose, did not live to leave this review. I feel it is very important to warn others and hope it saves someone. I don't know if it was helping her bones, so I cannot say anything on that. However, I do know she had itching after her second dose. After her third dose, she started declining very rapidly starting several hours after the shot. She was down with flu-like symptoms, then vomitting, advancing to dehydration over a week's time. At the end of that week, she went into liver failure, kidney failure, then shock and sadly, death. Again, very active and healthy prior. All viruses and bacterial cultures were negative, all other testing revealed no cause. All we have to explain it is the "coincidental" timing of this shot. There is no other explanation for her rapid decline. Please, please be very cautious.

Related Reading: flu | dehydration | liver

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References

Medical Editor: John P. Cunha, DO, FACOEP

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