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Prolia

USER REVIEWS

Comment from: Albina20, 65-74 on Treatment for 1-6 months (Patient) Published: November 22

Pain worse than I've ever had, skin aged and leathery, constipation and can't breathe. I'm in worse shape now than before I had prolia--will NOT take any more. Stomach and digestion problems all the time, can't sleep. 6 months of hell for me. Cholesterol went way up. RA got worse--Dr. said it would help it--a lie! Dr. treated me as a guinea pig--used a sample she had in office--did NOT charge ins. for it. She gave me NO info and now will NOT believe my problems are caused by prolia. My back hurts worse than it ever did--I live this every day now--I hate my life since prolia--will not go back to that dr. I count the days til the 6 mo. are up, but I wonder if my body and life will ever be back to what it was or if there has been permanent damage or change in my body. I've had RA for 8 yrs. and that is enough to deal with. I had a severe reaction to Embrel for RA and prolia is made by the same co. So I don't think I should ever have been given prolia. I have been an FDA statistic for both drugs now.

Related Reading: constipation | prolia | cholesterol

Comment from: Pasta girl, 55-64 on Treatment for 1-6 months (Patient) Published: June 04

Was unable to tolorate Fasomax or Actonel. Since I had such a drastic reaction to actonel, I did my home work with Prolia. Visited four doctors for advise. OBGYN, Endocrin, GP and Othopedist. Today is six months since I had my first and last Prolia shot. I have been to more doctors in this six month period than any other six months in my life. If you are having bad side effects report to Amgen health professional 1-877-562-4111. Spoke with Angen 40 min. Very informative. Amgen has no data when side effects will ease. Also learned that people who had difficulty with Fasomax and actenel were omitted from test group. I wonder how many people having bad side effects from Prolia also had trouble with other ostro drugs? Six months later sill having side effects. I could go on and on with the side effects. I was going to the gyn 3x a week lifting serious weights. Walking eight miles a day at work. Now unable to lift half the weight amount and have pain that lasts for weeks after a work out. Could anyone advise when their bones and muscle pain eased. Did they take hot baths, heating pad, physcial therapy? Advil and Vicodim only work, occasionally. Thank you

Related Reading: actonel | prolia

Comment from: pasta girl, 55-64 on Treatment for 1-6 months (Patient) Published: June 04

Pasta girl here again: Forgot to mention when speaking with Amgen regarding test group and placebo group. Test group received Prolia and placebo group received non active ingredients in Prolia. Bone and muscle pain were present in both groups. Some of my side effects: Flu like symptoms, fatique, Fibromyalgia type symptoms. (Test was taken no Fibromyalgia) I went for a 10 min walk and developed a pain in my left inner calf. A bump the size of a small rock. Appeared on my calf. Doctor thought it might be a Peripheral aneurysm. Went for a Doppler. All was negative. Bump eased by taking hot baths and rest. Still have ringing in my ears and sciatica pain. Never had these issues before. Only medication I am on is Calcium pills. Upper thighs feel like they are pulling, can't get comfortable, can't cross legs. Often wake up with pain in low extremities. Normally, slept through the night Burning in elbows, knee caps and spine all at the same time. Than it goes away. At times it feels like my neck and spine are breaking down. Pain travels and is at different levels at different times. Can't wait to feel better and get back to my regular work out routine. I am also sending a report to FDA.

Related Reading: flu | fibromyalgia | aneurysm

Comment from: 55-64 on Treatment for 6 months - 1 year (Patient) Published: October 30

DO not listen to the other posters here who are most likely making stuff up trying to scare you. My sister is a physician and she went over all the side effects with me. The only real concern is a rash since Prolia does NOT go through the kidney or liver like all the other drugs. This is by FAR the SAFEST osteoporosis medicine. And its the easiest too. When looking at the side effects also look at how many people in the placebo group had. mostly the same. I hope that helps..

Related Reading: rash | liver | osteoporosis

Comment from: RN4GoodHealth, 55-64 on Treatment for 2-5 years (Patient) Published: May 31

I am a Registered Professional Nurse. I agonized about taking this or any medication for bone density. I became menopausal at 40 and had a total thyroidectomy secondary to cancer. My medical history combined with being slender gave me little surprise that my bones had suffered as a consequence. Tried fosamax and Boniva, had esophageal erosion and went off them. Sustained an acetalbular hip fracture without a fall by slipping on wet pavement and catching my balance ! Went to a an orthopedist who missed the fracture, an orthopedic spealist who treated the fracture, a bone specialist, two endocrinologists and a rheumatologist. No one agreed on my treatment plan.Began Prolia three years ago after being reassured that there were few side effects, and being told I had to do something! I have been reporting increased discomfort in my joints, shoulders, hips, knees,fingers and increased infections involving respiratory , bladder and skin. At one point I had unusual shortness of breath. I exercise, am an avid walker, eat a nutritious diet, and remain slender. I have been told that the side effects I report are not drug related. I have been reading other patients observations and must disagree with the doctors. Many patients have similar complaints. I am ambivalent to remain on this medication. You lose "progress " when discontinuing the drug and must "chase" it with other drugs to keep what you have supposedly gained. Read extensively about the mechanism of action behind the drug. Are artificially hardened old thicker bones actually better than naturally formed thinner newer bones? I am not convinced at this point!

Related Reading: fosamax | boniva

Comment from: champ, 55-64 on Treatment for 6 months - 1 year (Patient) Published: June 22

I got my first injection of Prolia in September of 2010 without much explanation from my doctor except that it was the next drug we could try to help with my osteoporosis. Since my immune system has been compromised because of Lyme Disease, I asked him if this was a problem. No, he said, just wash your hands more. Two-three months later, I felt awful. Back pain, joint pain, muscle pain, gas, acid reflux, etc. I ended up in the ER with pancreatitis in November. By March I didn't need a heating pad for my backpain nor Vicodin for the pain anymore. My second injection was due March 30. I again asked my doctor if my sympotoms could be caused by the Prolia; he said no. Got the second injection and wish I never had. Within days, the pain returned plus it was in my legs and toes as well. I called my doctor; he said it wasn't the Prolia; take Advil and call my primary care doctor. I then went to the Prolia website and found that all my symptoms were side effects of the Prolia. My chloesterol went from 186 to 233 in 6 mos., after just one dose of the Prolia. If I had been given the proper information from the prescribing doctor before hand so I could make an educated decision, I would NOT have taken this new, just off the market Prolia medication. My primary care doctor, my GYN doctor, my gastro doctor, my allergist, and my general surgeon cannot believe my doctor would even think of putting me on such a new medication with my medical history of Lyme Disease and food/medication allergies. We are all hoping by September the Prolia will be out of my system and I will have not any long term effects or damage. Take it off the market, FDA.

Related Reading: prolia | osteoporosis | lyme disease

Comment from: Colin, 55-64 on Treatment for 1-2 years (Patient) Published: May 22

I am a fit 63 year old male who was surprised to learn he had low bone density. I took 4 injections of Prolia without side effects from 2014 to 2016 on recommendation of an endocrinologist. My bone density appeared to have improved slightly. I had a follow up appointment with my endocrinologist in May 2017 and he was quite concerned, having recently read reports of spontaneous spinal fractures and rapid reversal of bone density gains after ceasing to use Prolia. So we finally discussed where my Prolia use was going long term and he was vague - 10 years of Prolia and then transition to bisphosphonates. Ten years on a drug that hadn't been tested that long! I realized I was a guinea pig taking a drug with an alarming and growing list of side effects for uncertain benefit (after all, people have fractured femurs as a result of taking this drug - one of the strongest bones in the body). Time to abandon this train before it ran off the rails or crashed. I will take no more Prolia. Before you take Prolia have a careful chat to your physician about your long term plans - once on this drug, you can't stop without rapid reversal of bone density gain - you become a slave to it - so you may want consider whether there is any point in starting?

Comment from: jgrannie 13, 55-64 on Treatment for 1-6 months (Patient) Published: February 03

FU to previous posts. Now almost 4 mos after 1st injection. Not much improvement in symptoms to this poison. Did have to go to ER 2 times in Dec. for all the things this has done to me. RA, IBS, Back and Thigh pain all much worse. I can't eat because of the bad digestion probs I am experiencing now. Bad Headaches just won't go away. Generally not able to function well anymore. Confusion, Depression no improvement. I have hopefully finally gotten rid of ALL the bacterial infections that I have encountered since 10/15/2014. I have contacted FDA and will be filling reports on this medicine. My Drs. only comment to me over the phone was "Oh, you had history of bad bacterial infections!" Oh well, won't be seeing him again. I still go to the hospital infusion center that gave me the injection monthly for another medicine injection not related to this treatment and the Nurse who is in charge won't even look at me when I go in. I am not encouraged that these symptoms will improve in short time after reading some of these reviews. Please be advised that this medicine IS NOT FOR EVERYONE! Take care.

Related Reading: depression

Comment from: 65-74 (Patient) Published: January 09

I want to thank everyone here that rated this drug. I was almost convinced by my doctor to take this drug, but after reading all these side affects, I will NOT be trying this. I have determined that the risk is not worth the maybe help from this drug. I pray that these women get well after stopping the treatment.

Comment from: 65-74 on Treatment for 6 months - 1 year (Patient) Published: January 13

I have been very pleased with this medication. I only had to get a shot in the office and did not have any issues. I hated the idea of having to get infused or using a bisphosphonate because of the side effects. My doctor feels this is the drug of the future for treating osteoporosis.

Comment from: danielle, 65-74 on Treatment for 2-5 years (Patient) Published: June 30

after 3 yrs. of prolia always a little sick after, this time I have been very ill, it has now been 3 months and I am told it will take another 3 months to leave my system. I have sever rash incl.eyes,horrible muscle spasms in calfs. it has gone internal,hand & feet numbess, nausea, general feeling of poor health. I would want everyone to research well before taking this drug, it can happen to anyone.

Related Reading: prolia | rash | muscle spasms

SLIDESHOW

Slideshow: Exercises for Knee Osteoarthritis and Joint Pain See Slideshow
Comment from: pasta girl, 55-64 on Treatment for 1-6 months (Patient) Published: June 04

If you have questions or negitive reactions to Prolia call Amgen Health 1-877-562-4111 and conatct FDA to report. Spoke with Amgen and they gave me more information than my four doctors. Test group was approx 7,500 people men and women. Prolia on the market for approx. three years. Prolia takes two weeks up to 21 days to concertrate in your system. This is why people are posting side effects begining at the two week point after receiving Prolia. I began experiencing side effects two weeks after injection. My doctor told me Prolia would be OUT of my system in two weeks. WRONG! Doctor advised she has 450 patients on Prolia and I am "The only one to have side effects". Don't be discouraged by these remarks. Be your own advicate, call Amgen. Six months later still having side effects. Going to my GP and asking for a physical therapy perscription. This drug has effected all aspects of my life, Work, social, and relationships etc. If anyone reading reviews knows of a class action law suit, please post on medical review web sites.

Related Reading: prolia

Comment from: Moih, 45-54 on Treatment for 1-6 months (Patient) Published: April 28

I see comments from some saying "ignore the bad reviews, this drug worked fine for me" and I have to say do so at your own peril. I followed their advise and ignored the warnings and ended up angry that this drug was ever approved and at those who try to make those who had bad experiences appear to be whiners. I have to wonder if they actually work for Amgen, considering the sheer volume of us I've found online. Something is seriously wrong here. One week after my shot (October 2012) I had an infection of the jawbone and it only went downhill from there. I was sick, in and out of my doctor's office and the hospital for 6 months, but it didn't end there. i had bone infections, pain in my thigh, lung infections, shingles, anemia and caught everything that was within 15 miles of me. I'm pretty sure that my immune system was completely shut down and is still, eighteen months later only working at 1/4 of what it used to be. I took this drug to prevent fractures, but it robbed me of my life for at least six months. i do not think the cost was worth it and am pretty much convinced now that this is a scam and we are the guinea pigs. They had to cancel the trials on multiple myeloma patients because 2x as many of them died when using Prolia. I'm not sure why some have reactions and others don't, but I think it is highly questionable to allow these drug dealers to put this out there without having a clue. To make it appear as though the side effects are a minimal risk when clearly they are not and to give the impression that the side effects are harmless when they are debilitating (which my OP was not) is at best disingenuous. I would never take this drug again and my doctor agrees.

Related Reading: shingles | anemia | multiple myeloma

Comment from: Disgusted, 65-74 on Treatment for 1-6 months (Patient) Published: April 23

Can't really say how effective yet. Received shot 2 months ago. It was easy to take but 3 weeks after getting shot, I started having muscle pain in upper thigh. Then, hip & knee began to hurt. I was walking 3 miles/day & now cannot walk without limping (no exercise for me). I feel it is very detrimental to my health to not exercise. I have severe pain day & night. So far pain is only on one side.

Comment from: bj, 55-64 on Treatment for 1-6 months (Patient) Published: June 22

Look at Mayo Clinic research on Denosaub. I had many side effects they list. Amgen did not include the same side effects for Prolia (active ingredient Denosaub). I had chest discomfort after a few weeks (we dismissed it to allergies), on the 31st day had lumps mimicking breast cancer, several rounds of biopsies, after that abscesses, dimpled skin, and more. I could feel it in my system with sweats and other changes. At around 5-months I could feel the lumps shrinking and going away. After 6-months with the exception of permanent scars, the problems have ceased. What a seriously traumatic event! I have filed FDA and Amgen reports. No one has done anything to assist. There is no data on the people who dropped out of the study after one shot. There is also no litigation pending which I would expect is the ONLY way to get vendor attention. If this happened to you or someone you know, have them file with FDA. That's the only way the next updated insert will include warnings for cancer mimicking breast issues.

Related Reading: breast cancer | scars | cancer

Comment from: chico, 55-64 on Treatment for 1-2 years (Patient) Published: March 27

I have had my second shot of Prolia for my Osteoporosis February 2014.I have become very ill from this drug. Three severe lung infections over the past 6 months, 2 chest X-rays, antibiotics, SEVERE! cough, Severe chest pain, leg cramps, skin irritations, exhaustion,loss of sleep, watering eyes,runny nose, hearing loss...it goes on and on. I WILL NEVER NEVER NEVER take this medication again. Finally my physician said all my illness must be stemming from the Prolia. I have been a very healthy and active person prior to taking this med. I called the FDA and reported all side effects and I filled out the forms they sent to me. I recommend that you do the same, either call or go on FDA web site. This is a toxic drug with miserable and devastating side effects. Please reconsider taking this medication if your Dr. prescribes this. READ, inform yourself, ask questions. The severe side effects are NOT worth the potential????help from the drug. Get a second, third opinion. Cherish your beloved life.

Related Reading: osteoporosis | cough | chest pain

Comment from: mrs, 65-74 on Treatment for 6 months - 1 year (Patient) Published: February 27

Bone mass loss recently put me in the category of osteoporosis. Have had two injections. I was a healthy active person with no other medical history. A few weeks after the 2nd injection I experienced hip and back pain that completely changed my life. The cost of the drug pales in comparison to what I have paid out for various therapies. The pain was severe and totally inexplicable; I did not 'hurt' my back, had done nothing unusual. I am a fit person and am not overweight. It is slowly easing up 2 months later. I don't know what to do next as I can't tolerate the oral meds. But one thing's for sure…I regret taking Prolia in the first place, wish I had done my research and will NOT take Prolia again. I'm happy for those who have had no side effects but they seem to be in the minority.

Related Reading: osteoporosis | prolia

Comment from: crc, 45-54 on Treatment for 6 months - 1 year (Patient) Published: June 03

Doctor did not advise of side effects, the worst ever, I don't think my life would ever be the same. Very sick the last six months, out of work for three months, multiple symptons, nausea, root canal, blurred vision , skin lesions, leg, arm and back pain, high blood pressure and heart problems, etc.

Related Reading: high blood pressure

Comment from: Samantha, 55-64 on Treatment for less than 1 month (Patient) Published: June 06

Hi - Recently I was given Prolia but thankfully, so far - good! I have osteoporosis and had no other alternative left than trying Prolia. (I had tried the other Biphosonates drugs which I had terrible reactions to and I've even tried "natural" remedies which did not help). I almost cancelled my appt. for Prolia after reading all the horror stories that sadly many on this review site have faced. My doctor then called me at home and spoke with me at length, he even looked at this review site while on the phone with me. He told me he has 150 patients on Prolia - some have taken it since it first came out and NONE have had any side effects. (I said it would be nice if they would share their reviews here.) He said he would give this drug to his mom or sister if they needed it. My bone loss was going down hill (I have copies of my scans) and was losing approx. 3% bone mass yearly. So, I will be back to report over time and hopefully I'll continue to have a positive experience to share...Best Wishes to All...

Comment from: KAYE, 45-54 on Treatment for 1-6 months Published: August 01

Do not take this drug. The side effects can be awful my mother has been hospitalized twice. Bladder infection, bleeding ulcer, fluid around the heart,low sodium, and now pneumonia.

Related Reading: bladder infection | pneumonia

Comment from: GG, 55-64 on Treatment for less than 1 month (Patient) Published: April 29

I hope you will post this, but for a different reason. I wanted to say how eternally grateful I am for those who did try Prolia and warned me of the terrible effects they incurred. I was a week away from a first shot, I read the posts and I truly believe you saved my quality of life. I just wanted to say thank you from the bottom of my heart. I wish things were more simple, that those of us who do need to rebuild or preserve our bones could take something without such tragedy happening post-med. I guess some people are lucky and do benefit...but my God the risks...If I had gone ahead and gotten these symptoms, it would have devastated me to the point I don't think I could fight anymore...would have been so exhausted and disillusioned...since both doctors telling me, no problem you'll be fine...take it, you need it...those who have troubles are just needles in the haystack..I almost did it...last minute told spine doc and rheumatologist, "I found the needles in the haystacks, like a thousand plus of them!" Only thing I've been able to endure and gives me quality of life with RA is prednisone, and I mean like for years! Thus, bones will continue to weaken....then after a bad fall, a back compression fracture, obvious was told needed something..tried Forteo, two months and got so exhausted could not walk, shortness of breath, chest pains, ready for hospital...thought, hoped Prolia option, but no...Yet, I have quality of life...i will try Enbrel again, but Prolia, I am not taking that chance...Perhaps some will be lucky, but certainly more caution is necessary than the doctors let on...and when direct result symptoms from Prolia use are reported, patients need to be believed!!! Wellness hugs to all..God Bless...GG

Related Reading: prednisone | forteo | enbrel

Comment from: kitty, 55-64 on Treatment for 1-6 months (Patient) Published: February 08

This drug effects everyone differently. From No side effects, some after 2 weeks to months after injection and ending at six months, others side effects after several injections, and yet others two weeks after injection and slowing building lasting over six months to years. After one injection, I happen to be the one who's side effects showed up at two weeks and slowly increased even after six month mark. At eleven months after injection, I was able to sleep thru one or two nights a month. Now years since my injection and still dealing with side effects. You know your body. Document your side effects. Recovery is slow. This drug can cause confusion and it is helpful to keep a log of your experience and progress. Call Amgen, and write FDA,talk to a doctor who will listen. One of the worst feelings is going thru these weird pains and doctors not knowing what to say,or Amgen not answering calls for help. Felt angry,frightened and alone Read others remarks and you will be able to put into words what you are experiencing. Website doesn't have enough storage for me to explain my side effects, doctors and Amgen's remarks, medical testing etc. Progress of recovery is slow with many set backs. Wishing all who are effected a fast recovery.

QUESTION

What joints are most often affected by osteoarthritis? See Answer
Comment from: hurtstomuch, 45-54 on Treatment for 1-6 months (Patient) Published: July 02

I took this drug against my better judgement because I was diag. with advanced osteoporosis. My Dr. thought it to be the "safer" and more effective drug to take. I really wish the Dr's would take the meds themselves before recomending it to their patients. Anyway, after I received the shot I did not have any side effects for about 2-3 weeks. Then all heck broke loose! I feel awful! Just can't describe the feeling. Back constantly hurts, throat and esophagus hurt, chest hurts, muscles ache and I can hardly lift my arms above my head. I just don't feel good at all and thats not like me. I wish I had done more research on this drug that was only researched for 3 years. Don't know if it is "working" or not, but will NOT be taking another shot in the future. Just another drug company greasing the palm of the FDA to get it on the market fast to make big bucks. $800.00 a shot??? Geezzzz. How can you give a drug to someone that you have only researched 3 years? What are the long term effects? They don't know and probably don't care. It's all about the $$$. So, if you want ot be a human guina pig like I was, then by all means, have a shot.

Related Reading: osteoporosis

Comment from: car, 55-64 on Treatment for 6 months - 1 year (Patient) Published: January 10

About a week after first injection, developed severe neuropathy in both feet. My doctor said that it couldn't have been from the drug. Many specialists later, a vascular specialist said that the drug possibly caused my lymphedema. It has ruined my life. Will never get another injection. I'd rather break a bone!

Related Reading: lymphedema

Comment from: mom3, 45-54 on Treatment for 1-2 years (Patient) Published: October 07

I thought I was going crazy...but reading these reviews have eased my mind. Two weeks after my injection EVERY BONE AND JOINT in my body is extremely PAINFUL. This is my third shot, first one was not so bad, 6 months later for second shot, the severe pain started. I put the third round for an extra few months because I didn't want to ruin my summer. Now, after the 3rd dose I can barely move and get through the day. I cant exercise or get to the gym, just getting out of bed and getting through my day as a teacher is almost impossible. I WILL NEVER TAKE ANOTHER DOSE OF THIS AGAIN. It has also done NOTHING, minimal change in my bone density testing, so IMO do not do it.

References

Medical Editor: John P. Cunha, DO, FACOEP

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