I'm wondering if anyone else had had prolonged side effects from Prolia and if the side effects ever went away. I am super stressed because my lying in bed almost 24/7 for the past 6 days has caused throbbing bruising on parts of my head. I had to lie flat or I had terrible pain since a spinal tap. But many others lie in bed for months without their skulls bruising. This bruising is a side effect from my 6 month Prolia injection for my osteoporosis. I'm 3 months after the injection with a half-life of 4 weeks, meaning every 4 weeks the amount is supposed to be cut in half. But the doctor couldn't find out when the side effects would ever go away. My face was on fire for 2 months and my jaw bones hurt like crazy. My skin is still having problems and I still need extreme padding between my legs and around my body at night from the bones hurting. I had to stop wearing my sleep apnea mask due to the bruising. And I need at least 12 hours of sleep a night since my stroke or my migraines go sky high. I'm stressed about having to lie down now at least 12 hours or more a day due to my migraines.
I'm hoping that the side effects have gone away for others who had prolonged side effects.
Anyone with prolonged effects from Prolia? Mine are bad?
Question posted by sara12345 on 16 Dec 2012
Last updated on 3 July 2024
14 Answers
just my thoughts... first post here. ive been taking the shots for 4 yrs & am noticing i am bruising Very easily, im out of breath climbing a few stairs, neck & shoulder pain/tightness & daily headaches. gonna tell my dr to skip next shot. hard to tell if this is age related... im 61. broke my foot before the injections, hence the need for injections. dr said my bones were like chalk. ;-(
is there an alternative without these horrid side effects?
Hi. I just had my first shot 2 weeks ago. The first week I was fine. Then about a week ago I started getting short of breath. I’m wondering if Prolia is interfering with the Effexor I take for anxiety, because I’m getting what I call panic breathing that I had with anxiety before starting Effexor. Or maybe I’m reacting to the Prolia. Have you or anyone experienced shortness of breath? It is starting to affect my way of life. :(
Osteoblasts will stimulate hydroxyapaptite bone spur formation
Could you explain how your comments relate to Prolia?
Thanks for your answer.
I have had 4 Prolia shots in 2 years. The last one was in December of 2018. The side effects of thus last shot have been life changing. I have extreme leg, jaw, neck and lower pack pain. Headaches are frequent. I have difficulty finding a comfortable position fir sleeping, toss and turn all night. Depressive thoughts and have avoided social gatherings because of my pain in walking. All joints and feet are swollen . It is a miserable medicine and wish someone would create an antidote. Will never have another shot of this poison. Please God take this from my body!
I will not take this drug anymore. I have taken it 4 times with a break between 2 of them. Every time I take it, after a week or two my hair starts to fall out... within the first 2-5 months it comes almost by the handful and then gradually comes out less. It does not come back the same after it falls out. I feel so embarrassed. I will say the drug worked as far as improving my osteoporosis numbers. It improved in my back and my spine, but because of such severe hair loss I will never take it again.
Wow, that's a shocking reaction. But if it did that to your hair, it could do worse to you with additional injections. And some people have said that the worst effects happened after a number of injections. I'm wondering how your hair came in differently, but I respect you for not wanting to describe it. I think that you are making the right decision.
It DIDNT come in!! After so much loss, it has not reappeared except for just some tiny fine hair which doesn't grow at all... its like baby fine. If you look up this drug it is a chemotherapy drug.
I am so sorry to hear that you lost your hair! I did look up and did see that it is used in chemotherapy which can lead to people losing their hair. It may come back after awhile. My severe skin inflammation finally went away 6 years later. But I still have the bone bruising which prevents me from wearing a CPAP mask for very severe sleep apnea which puts me at risk for heart disease, stroke, asthma and chronic pain. I've already had the last 3. So Prolia has had a very deleterious side effect. You should report your problem to the FDA. Click on Medwatch and then click to report it. That's what I did. What do you think about wearing a wig? But really, I am sorry to hear about your hair loss. It has to be a constant reminder of this horrible drug.
How are you doing today?
To jillb234, I just read below that you've had 5 prolia and have horrible pain. As you read through this question and others like it, you will see that a lot of people have had terrible pain issues. I'm glad that you are not going to continue it.
As for me, it has been over 6 years since I had just one Prolia injection. My severe skin issues finally went away about 3 months ago. But I still have the bone pain from the slightest pressure. I have to take a pillow to social events, parties and restaurants or I have bone pain that lasts a long time. I need to wear a CPAP mask for very severe sleep apnea. Before the Prolia, I could wear the mask all night long without problems. Now to wear a mask for a couple hours, I get severe bruising that looks like my skin has worn off. I had hoped that my bones would get better since the skin finally got better, but no change at all with the bones.
When I had to have dental surgery, the dental surgeon told me that people who had been on Prolia had more complications with the surgery for 10 to 15 years. My response was oh that's great! Maybe I will get better 10 years from when my Prolia shot was instead of being permanent.
So do not have any more Prolia injections. And just because my problems have lasted so long, does NOT mean that yours will last that long. Everyone is different. I do wish you better days.
But I have to tell you that you might try acupuncture. The needles don't hurt. Occasionally I'll feel a slight twinge which he fixes immediately. That has helped my severe migraines, my knee pain after a bad fall, arm pain and trigeminal neuralgia (like electric shocks through my teeth). I never thought about him for my bone pain because it is so pervasive through my whole body. Now I will consult with him about that. Again I do wish you the best.
I am 63 years old, was on Fosamax for 5 years and was told I could no longer be on it. Dr recommended Prolia. I questioned the side effects and was told she put her mother and grandmother on it and highly recommended it. My last bone scan was great. The nurse even asked, "Who said I had Osteoporosis?" I have had six injections now. I have recently been to a arthritis Dr. who recommended me to a neurosurgeon who wants to do spine surgery, (I think not) who then sent me to a pain management clinic. Nothing they have tried helps me. They are still "experimenting". I have been doing my own research now and reading these questions/answers, I think it is all side effects due to the Prolia injections. Severe neck, shoulder, hip, leg pain. Pain medications do not help at all! Jaw and ear pain, dizziness, stomach/bowel issues. I have read where that it is not recommended to stop the injections once you have been on them.
I get up in the morning early to sit with a heating pad for an hour just to be able to move to go to work. I purchased a TENS unit this past spring, it feels great, but doesn't help in the long run. I am not so sure I recommend Prolia. I have a regular appointment with my doctor in a couple of weeks and have to KNOW what is going on with me. I cannot continue this way. Everybody is concerned for me too. Please do your research BEFORE you decide to try Prolia. I am ready for an alternative.
I'm sorry you're having such a difficult time after taking Prolia. I too had my first injection of Prolia about 2 months ago. I've had all sorts of bad side effects. My left jaw is so sore that I can hardly chew. I have bad headaches, backaches, arms, shoulders, neck, legs, even my toes hurt really bad. It's scary! I hope my jaw doesn't end up deformed or my teeth get loose and come out! Does anyone know another person this has happened to?
Carolminton, So sorry to hear about your problems. I was answering your other comment or answer, but my internet went down and I don't know how to bring it back. But I think that you should have your jaw looked at preferably by a dentist or less so by a doctor since Prolia can cause jaw disintegration. Hopefully your jaw pain will subside, but it should be a valid worry for you. And regarding your painful neck, shoulders, arms, legs, etc., you should see a doctor about this. Make sure that you let the doctor who ordered the Prolia injection know about your problems. In my case, my extreme skin inflammation and bone pain have continued for 3 1/2 years, but it is too soon to say that your problems will continue after just 2 months of the symptoms. Please let me know how things turn out for you. I would really like to know. And thanks for your comment.
I've had two Prolia injections and am due for the third 3 months. However, during this past 8 or 9 months I've had terrible pain in my right heel and it turns out I have a bone spur growing there which is affecting my Achilles Tendon. I am having surgery in two weeks which will require several months of rehab before I can walk again. And now I'm feeling a bone in my left heel which was not there before. I am convinced the Prolia has caused this to happen and am definitely not going to continue with the treatment. Has anybody else had this problem?
Terrible that you have to have surgery and with such a long recovery. I don't know that Prolia would be responsible for bone spurs, since it is so specific to just 2 areas. But others have noted terrible effects after having gotten multiple injections of Prolia, so I would be concerned that you could have some of the terrible effects that others have had with additional injections. Hope that your recovery is as fast as possible. Good luck to you.
I have had one injection of Prolia and have all kinds of bad side effects. I have developed fibromyalgia and plantar fasciitis in one of my feet. This is not suppose to be a side effect but my physical therapist believes that it weakened my muscles which caused the plantar fasciitis. Now I am going to pt three days a week and numerous blood tests to try to find out what is causing all my pain issues. Nothing any different except the Prolia. In addition to all the aches and pains, I have gained 13lbs. in less than six months which I have NEVER done. I am 58 but feel like I have aged 15 years in the past few months. The six months is up since my 1st. injection but the side effects have not let up. I don't know what to do about my osteoporosis but I am scared to try any of these drugs at this point.
To pjam, Sorry to hear about your problems since the Prolia. The problems with Fosamax and drugs like it can have long lasting problems according to manufacturer's literature, so I would never take anything else for my osteoporosis. I did take Fosamax for over 5 years and it has done little to help me. But I do wear estrogen patches which help to prevent further loss of bone. The patches have extremely few risks if you really research it. So that's my strategy in addition to watching myself that I don't lift too much and do exercises to help my balance. It's important not to fall. My mother had severe osteoporosis and never broke anything, but she was very careful. She lived to 88 years. I will wait a short amount of time before closing up this question, because when they tell me that I've gotten a new answer to my question, they don't tell me which answer or how many comments after it. It is extremely cumbersome to find the answer.
I too have fibromyalgia and need physical therapy for many different things, but that has had nothing to do with the Prolia. I do hope that you do better. Let me know by friending me if I have closed this question. Best, Sara
I'm just wondering how you are doing now? I have had prolia 5 times and have horrible pain. I told my Dr last visit I didn't want anymore he almost insisted, so I did. Go tomorrow and I'm not doing it again.
I have had vague pains for years but it may be from fibromialgia! I had one shot about two years ago but felt so bad afterward I haven't had another one since! I still have tenderness in the muscle on my left arm where they gave me my first shot! I am so sorry to hear others are having major problems with Prolia! I thought the FDA was supposed to keep drugs like this from going main stream! Celebrities endorse us and make us feel it is safe! We do need to research thoroughly what we allow in our bodies! I just asked a few vague questions that concerned me before taking my first dose!
The FDA let Prolia on the market without much research. And since then, FDA needs to hear from consumers about any side effects not on the list provided by the manufacturer. Your side effects are not on the list. So it's important that you file a report at the FDA website. It's called filing a Mediwatch. Only if the FDA receives enough complaints about the same thing will they force the manufacturer to list those side effects. I did that. I really hope that you will too.
I got my first Prolia shot6 days ago. After the 3rd day I noticed a couple random bruises…they are round about the size of a dime. They do not hurt to touch. The next day I discovered another bruise, the next day 2 more and today yet another one. The first ones are beginning to fade. The ony thing I can think of that causes this is the injection. I just had complete bloodwork…4 weeks ago and everything was perfect. Now all these bruies. Weird cause I feel GREAT! One more thing…my appetite has gotten out of control since the shot. OMG. Im 64. Need to go to dr to be sure bruises are from Prolia. Im eating myself out of house and home. UGH
I still have bone pain unless I pad my rear to sit on harder chairs and even soft chairs still hurt. And I have to have a pillow between my knees to sleep. Never needed that before the Prolia. I can bruise more easily now. After the Prolia, the back of my head would bruise from the CPAP mask!!! Now with my severe skin inflammation from Prolia, I can't wear the mask. As for the eating, that's a new one, but you should certainly bring it to your doctor's attention. And my side effects got far worse as time went on. They were far worse a month later than the first week. So certainly wish you the best luck with things. And once you know the full effect from the Prolia, after a few months, you should file a Medwatch with the FDA about your side effects from Prolia. Good luck!
I have fibromyalgia also, and severe osteoporosis (caused by Prednisone)!! My leg was broken in July and back was broken in May, both in 2015. Two months ago I had my first Prolia injection. "Boy," was that a mistake!! "Wish I could go back to my Dr. and give it back." Prolia injections last for 6 months, but I've heard the bad side effects can last for years. My jaw hurts so bad that I can hardly chew now. My back, neck, arms, legs, even toes ache most of the time. I feel like I have the flu every day. My hair is coming out by hands full. This is so depressing. Wish I'd never heard of Prolia. What could I take for Osteoporosis that wouldn't have so many bad and serious side effects?
In addition to my other comment to you, I am so sorry to hear about your broken bones. Were you exerting yourself when the breaks occurred. Depending on how you answer that, can you now do very little physically to prevent further breaks? I'm wondering about how old you are, if you don't mind telling me. I will private question you if that is better for you. It must be very scary for you. I would be terrified myself. I will pray for you. God bless you.
All I can say is this is a bummer. I, myself, have been on Prolia for two years with zero side effects with improved bone density. So, for some it works and for others not so good. My endo has many of her patients on the drug and informs me that none are reporting adverse side effects which is good. It is too bad that there is not a way to determine if a drug is going to cause issues before prescribing it. BTW, an excellent source of information is on the national osteoporosis foundation web site. This site covers everything one needs to know about osteoporosis.
Weighing in on Prolia... I had one injection and previous to the injection I could run 3 miles, work, and go from morning to night doing my life. Since the injection, I have completely lost my appetite, dropped over 20 pounds, my stamina is zilch, and I have new autoimmune symptoms cropping up. I get gassed going up two flights of stairs. Dr. is running tests, and the gastroenterologist is thinking it's in part the Prolia. I will never, ever have another injection, but am glad it worked for others. Everyone reacts differently to medications, but wow--this one is a doozy.
Prolia went on the market without much research for a long period of time. It's important that anyone with side effects not on the list should file a report on your side effects at the FDA website. It's called filing a Mediwatch. The side effects that you mention are NOT on the side effect list. Only if FDA receives enough complaints about the same thing will they force the manufacturer to list those side effects. I did that. I really hope that you will too.
Just wondering how your tests came out. Did it seem like all or most of your symptoms were from the Prolia? There are many terrible side effects similar to yours on several of these questions. This just shows how terrible the injection is.
Do you know if the side effects of Prolia get any better after 2 months?
Sorry to tell you this, but my bad side effects from Prolia have lasted for over 3 and a half years. I have continued extreme skin inflammation and bone pain. I have not been able to wear my CPAP mask for my sleep obstruction because I get a rash on my face. Even just lightly touching my face causes irritation. Petting my cats is like putting my hands in fiberglass. Even sitting on a soft chair causes irritation to my bones. I have to take a pillow with me to restaurants to sit on. I have to sleep with pillows between my knees and feet. Cannot wear a bra. These are daily problems. Having to go to the hospital as some people have after the Prolia injection, which was stated in the company literature, would have been a gift in comparison.
My heart goes out to you Sara. This sounds like a terrible drug if it can cause these terrible side effects that everyone is writing about. Good luck to everyone. Peggy.
Thanks for your support. I still have the skin inflammation and bones easily bruising more than 2 and 1/2 years later. E.g. my skin could not tolerate a heart halter monitor that was important to diagnose my heart. After less than a day later after having it on, my chest had red welts and bright redness from wearing it, which is still showing for at least a week now. I wore the same monitor years ago with no problem at all. Still can't pet my cats without getting a fiberglass-like reaction--the skin hurting and turning red. Was it worth the small bone improvement? No.
I have not continued with Prolia since my first shot almost two years ago! My lower teeth loosened and my jaw hurt terribly! I have pain in my lower back and left foot! The muscle at the injection site is still sore to the touch! I instinctively felt that Prolia was not compatible with my system! I will have a bone scan this year and see where I stand on taking meds for my osteoporosis!
So sorry to hear about your side effects. You really should go to the FDA website and file a Mediwatch which lets you give the information about your side effects. If the FDA gets enough similar complaints, they will force the company to list these as side effects to the drug.
And yes, the doctors always push the meds for osteoporosis. Consumers Reports stated that with the minimal benefit from Fosamax and all the other meds in the same class, that they didn't think it was worth the risks of taking the meds. There are very bad side effects from the meds that have a very long life. A friend of mine took just 2 doses of Fosamax and has had severe pain ever since--2 years ago. I took Fosamax without a problem for 5 years (the maximum amount of time recommended) and now have osteoporosis. A lot of good the pill did for me. My mother had very bad osteoporosis and never broke or fractured a bone, but she was very careful. That is my current plan.
Sara, How are you doing now? Did your teeth tighten back up or did any come out? Is your jaw bone affected by Prolia other than soreness? I have severe osteoporosis, and fibromyalgia too. In 2015 my back broke and my right leg, at different times. I had my first injection of Prolia 2 months ago. That will be my LAST ONE TOO!! My jaw is so sore that I can hardly chew, my neck, shoulders, arms, legs, even my toes hurt badly with pain. I feel like I have the flu every day. I feel 30 yrs. older than I am. Pray it gets better soon. God bless you.
To Carolminton,
I just found your response today, almost a year later. When they tell me that there is an answer to my question, they don't tell me where it is. I have to open as many more comments as I can which gets cumbersome. Now it is over 4 years later and my skin inflammation is still so bad that I cannot wear my CPAP mask which gives me terrible quality sleep. And I still have the bone problems. It appears to be permanent, but I would really like to know if your pain went away. Since it was only 2 months since your injection, I would think that it probably has been relieved. I hope so.
Exercise and strengthening exercises are certainly a good thing to do. That will help your bones. I'm sorry that I don't know about any herbal remedies. I do wear estrogen patches at age 62. The gynecologist thought that was the single best thing I could do for my bones since I wasn't taking any more of the bone drugs. The estrogen helps to prevent further loss of the bones. It doesn't build back new bone, but with these bone drugs, the quality of the bones have problems as I'm sure that you are aware. And I have researched the hazards with estrogen, but have found the risks to be very minimal. The news articles are misleading about estrogen if you research it further and have a good doctor who disputes the gist of the news articles.
I have osteoporosis and have researched all the options. For the small gains with any of these remedies and the hazards with all of them, for myself it isn't worth it for me to try anything else. You have to make your own decisions. My mother had bad osteoporosis and died at the age of 88 without ever having any fractures or broken bones. But she was careful about what she did. That's the way that I am going. And BTW, I took Fosamax for 5 years and still have osteoporosis, so what good was it? Yes, my osteoporosis would probably be a little bit worse, but so what? Consumer Reports stated that given the very small gains with the whole class of drugs similar to Fosamax, they didn't think it warranted the risks.
Good luck to you with your decisions. I support whatever you decide.
My mother who is 81 had the shot a little over six months ago- she was in terrible pain her bones hurt so bad she could hardly walk and she was so confused, and couldn't remember anything such as what she just ate 5 min. ago, what eyeglasses she wears, she wore sunglasses 24/7 for 3 weeks- we were so scared- we thought she had on set of dementia or Alzheimer's she had a bunch of tests brain scan etc.. All came back fine- well the six months is about over and she is returning to normal- improved memory, not confused, walking again, it came on so fast but she is getting better everyday now! The doctor wants her to have another injection, but our whole family is totally against it! It really has been a 6 month nightmare!!!
Did her bone pain start after the injection? But with the dementia alone, I would say no to more Prolia. My mother died at 88 with serious osteoporosis and never broke a bone. But then, she was very careful and moved slowly. I'll have to hope to go the way of my mother. I have also read terrible things about Fosamax and other meds in that drug group. A friend of mine had terrible pain forever after just one Fosamax. I took it for over 5 years, but it didn't keep me from getting osteoporosis in my spine and osteopenia in my hips. So what good was it?
What are you going to take for your condition since you're not going to take prolix? My doctor wants me to take Prolia but I have read so many bad reviews so I have decided not to take it. Does anyone know something good to take from a herbal store or anything else. I was on fosamax already.
Please see my answer below. I decided to post it that way since others are not alerted to new comments.
I am having "lupus like " symptoms since my Prolia injection on Oct 28, 2013. My doctors have not been able to confirm a diagnosis for any of my problems other than side effects from the Prolia. I have had hair loss, extreme weight loss, exhaustion, depression & anxiety , blood pressure extreme highs & lows , labored breathing w/ chest pain causing me to have a stress test & echocardiogram . I am experiencing chronic body pain that moves to different locations all over my body. Before taking the Prolia shot I had been working out at least 3 times a week doing weight training & high intensity interval cardo. I worked in my yard constantly . Now I can barely do 10 mins of slow cardo. This makes me MAD !!! I would have been better off to take my chances with osteoporosis than to poison my body with these drugs .Now I see that I am just one of the MANY sacrifices made by the pharmaceutical industry ???
I pray that the symptoms subside after the 6 months lifespan of the drug.
So sorry to hear about your side effects. I sincerely hope that your symptoms go away. It's been almost a year and a half since my injection, and I'm still having the same problems.
Sara I am so sorry to hear that you have been suffering so severely for so long . Your symptoms make me ashamed to complain . I am thankful to have found this blog for support , because sometimes people make me feel like this is all in my head. ... . I will have you and all the other people suffering in this nightmare in my prayers .
I don't know how you can say that you feel ashamed to complain. You have plenty to complain about. I am truly sorry for your side effects. You have my prayers for you. And I agree with you that risking osteoporosis is my way from here. There are terrible possible side effects from Fosamax and every medication in the same classification. My mother had severe osteoporosis and never broke a bone. She was very careful. She died at age 88 from other causes. I do wear an estrogen patch which slows the bone loss. At least it's something.
Just got its dose of Prolia in April and allowed only 1/2 strengthen injected
I have been in hell everlsince Poison for me --- pain all over the place which waxes and wanes bruises delicate burning itchy shin which reacts to clothing. Also breast nipples so tender and red could not even wear bra... Maybe I would never have a fracture anyway and I will NEVER have another injectnn
How smart of you to only have gotten 1/2 of the dose. But what a terrible reaction. Your skin reactions sound a little bit worse than mine, but my skin inflammation and bone problems have lasted almost 3 years. I sincerely hope that your reaction does not last much longer. I cannot wear my CPAP mask due to the skin inflammation which has caused major problems for me since I really need the mask. You should file a Medwatch with the FDA about your reaction. That's the only way to hold this manufacturer accountable for it's terrible injection. Would appreciate if you keep me posted about your progress.
I had my second injection and have terrible pain al throughout my body. It is similar to flu pain but worse than I have ever experienced. I have to get up at least 2 hrs before I can feel human. I sincerely hope this pain subsides with time but I have read where some have commented that it doesn’t let up even after 2 or 3 yrs, I will NEVER take this again. I would NOT recommend this to anyone.
Related topics
osteoporosis, side effect, prolia, skin, bones
Further information
- Prolia uses and safety info
- Prolia prescribing info & package insert (for Health Professionals)
- Side effects of Prolia (detailed)
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