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Prolia side effects, anyone?

MERMAID_girl Member Posts: 3
edited August 2019 in Bone Health and Bone Loss

Would anyone like to share good their Prolia experiences? Side effects? Better DEXA scores? My oncologist wants me to take it, but I read about it on the Internet and it scared the bejeebers out of me looking for help in this group. I don't wantto take another thing that will compromise my health! 😥😥


  • outfield
    outfield Member Posts: 235
    edited August 2017

    What you'll get here won't be a random sampling of everybody who has taken Prolia. Has what you've read on the internet given percentages for how often the side effect that has you so concerned happens compared to placebo? That's something that you should be able to find.

    I took Prolia - my eczema on my hands did get worse for a time, but that wasn't a big deal. My DXA improved and I no longer qualify for it.

  • muska
    muska Member Posts: 224
    edited August 2017

    Mermaid, you didn't fill out your profile so we don't know anything about your diagnosis. But I assume you have or had BC so your health is probably somewhat compromised already - please excuse my sarcasm.

    I just had my 3rd Prolia injection a week ago, btw I administered it myself, the drug comes in self-injectable syringe. I haven't noticed any side effects from Prolia so far and it didn't slow me down. My first dexa since starting Prolia, will be in 2018, so I don't know how it impacted bone density. My main reason of getting it, is slightly reduced risk of bone mets.


  • VSB2015
    VSB2015 Member Posts: 20
    edited October 2017

    I had my first Prolia shot in May 2017. No side effects. then in August I began having abdominal issues, bloating, pain, excessive gas, Oncologist ordered CAT scan (no results yet) I also have muscle spasm in my jaw and rib cage, headaches, breakthrough heartburn (I already take acid reducer) Joint pain and cough. All since August. When I looked up Prolia almost everything was a side effect. I'm suppose to have another shot next month but if is the cause of all this, I'm not going. I feel terrible. Would like to know if anyone else had side effects and if you stopped Prolia did they go away.

  • Lili46
    Lili46 Member Posts: 102
    edited April 2018

    I haven't posted in several years and happened to see this thread when I went on tonight searching for some advice on osteoporosis treatment. I was diagnosed with osteopenia and then osteoporosis after my breast cancer treatment. I held off on taking medication until my rheumatologist voiced how concerned he was about my declining bone density. I have celiac disease, went through early menopause due to breast cancer treatment and I have a strong family history of osteoporosis. I had 3 Prolia injections in 2012-2013. My bone density stabilized so my doctor and I decided it was ok to take a "drug holiday" and see how I did. My 2017 DEXA scan showed that I had further decline in bone density in my spine so he wanted me to go back on Prolia. I had 2 injections in 2017. Six days after my 2nd injection I fell on my hip on my driveway walking 2 dogs and fractured my femur in two. I am a healthy, fit 56 year old so this was shocking to say the least! My xrays were consistent with that of an atypical femur fracture most likely caused by Prolia. I don't want to scare anyone because this is a rare side effect of Prolia but when you are the one that it happens to it is devastating. I won't get into all the surgical repair details and rehab postop but it was a tough 3 months. I wanted to let you know that it can happen. Prolia can also affect your immune system. During my recovery I came down with the flu and pneumonia. Weigh the risks vs. benefits when making this decision. Research all you can about Prolia and then make your decision. I'm trying to figure out what I am going to do for my bones going forward. I know you can all relate. Best of luck to you all.

  • annieb4
    annieb4 Member Posts: 25
    edited April 2018

    I just went into my 6 month check up yesterday with a new oncologist. Back in 2013 I was diagnosed with osteopenia. My oncologist has ordered a bone density scan to see where I am. He said I will probably be taking the Prolia shot. So then told my daughter who is a dental hygienist and she said that is a horrible shot to have to take. It works great on the bones, except seems to destroy the jaw bone. Also many oral surgeons won't handle you because of it. WTF !! Now I get to deal with this. I am 5 years on AI's and was thinking of stopping them before I heard this. The last thing I need is for my teeth and jaw bone to become weak not to mention the other side affects. What the hell kind of risk is this now!! All these drugs beginning with Chemo and rads and AI's and Effexor for the hot flashes and now this has just become to much. I am at a war with myself and don't know what to do.

  • veeder14
    veeder14 Member Posts: 269
    edited April 2018

    There's not a lot of good options. I had 3 Prolia shots then I quit after I needed an abscessed tooth pulled and no dentist would do it. I sure didn't want to get an infection going to my brain. Everyone is encouraged to go to the dentist before starting on the medication but nothing is said about what happens if you have dental problems during long term treatment.

    The doctors tried to pressure me into staying on it but I didn't. After I had been off of Prolia for 6 months my dentist was convinced by my rheumatologist that it was safe to do the extraction. Plus I felt like I had the flu from the day of the first injection until I quit. No thanks to dealing with this all time.

  • chronicpain
    chronicpain Member Posts: 217
    edited April 2018

    Hello to all Prolia users and former users! A few composite comments in a mini-treatise below:

    1. We unfortunately do not have perfect drugs without any side effect risk for women with osteoporosis (OP) without BC, (usual rx is bisphosphonates or low dose denosumab, trade name Prolia), for prevention of osteopenia progressing to OP with BC and anti-estrogen therapy (low dose Prolia 60mg every six months), or for BC treatment with bone mets (high dose denosumab at frequent intervals, Xgeva) .

    I was put on Prolia not just for my OP (previously on bisphosphonates many years) but for lowering future BC recurrence in bones. Most women, like me and many I know ( and men who get it for prostate cancer) have no major side effects, if any.

    It may not be worth risking rare side effects for some women in their own risk to benefit calculus, but I look to reports such as this one showing lower BC bone recurrence in post-menopausal women to encourage me to continue it.

    I have also had regular osteoporotic fractures, including at the hip, and they are no more fun than fractures from atypical femur fractures, ( I had one year of suffering), and a lot more common, so that is my relevant comparison if I do nothing. I will risk a rare atypical fracture to prevent the more common other fractures, as there are no good risk-free alternatives ( bisphosphonates can also cause problems with atypical fractures and ONJ). Nothing, no rx, is not an acceptable alternative for me given the stats.

    2. As for osteonecrosis of the jaw, ONJ, with Prolia, most people do not get it, so I can think of way scarier drugs to take for oral health, with all respect to dental hygienist daughters. Without cancer, reported risk is .01-.03% and with cancer (often with chemo or steroids or other factors that enhance risk including major dental procedures, and including those on high dosing) it is 1-2%.

    If a dental procedure is needed, such as abscess drainage, an informed oral surgeon will do it (I know not all are informed or just worry about law suits and have enough business without risking it) even if someone is on denosumab, as the risk of an undrained abscess outweighs the rare risk of ONJ. American Dental Association agrees.

    3. Let us not forget that rare atypical femur fractures occur in many people not on Prolia or bisphosphonates, though exact population incidence is not known, but they are certainly more common statistically with Prolia. On an absolute level, however, there is is just a handful of reported cases in a drug that has been out over ten years, (FREEDOM trial of thousands of patients summarized a lot of what we know about Prolia, had only two cases), and reports are confounded by prior bisphosphonate therapy in some. They are so rare that if they happen, they should be written up, perhaps BCO patients who had them, if clear, should urge their docs to do so!

    This review article article from 2017 claims there are no reported cases of documented atypical femur fractures in cancer patients treated for osteoporosis, and only one who was treated for mets (of course not everything is reported or written up)

    4. For any individual, the question is risk vs. benefit, balanced against uncertainty. Nothing is not always a great alternative. Prolia clearly lowers risk of common fractures of spine and hip, and likely lowers BC recurrence in bones, so I will take it ( for now).


    For ONJ risk minimization, I go to the dentist three times a year to keep my teeth good, avoid dental implants, do not smoke, and minimize my steroids as best I can. I also run back to the dentist at the first sign of infection to avoid an abscess, she is used to it. :)

    For atypical fracture prevention, which can be bilateral BTW, I watch out for new groin or hip pain, and for fragility fracture prevention I avoid activities likely to lead to falls, keep my 25-OH D level robust, and take calcium and vitamins.

    The rest is up to fate, absent new research that will change my choices.

    I say this as someone who has had rare, weird and freakish serious reactions to some procedures and drugs, and rare presentations of rare diseases ( other than my BC which has been mostly mainstream) , so I know they happen, and that not everything is published or known, and my sympathies go out to all who suffer rare or other side effects.

    I suggest we keep things balanced, compare frequency of symptoms we get and attribute to drugs with symptoms people on placebo, and be vigilant, but keep perspective. I have known side effects from my Arimidex and other meds, but right now I am pretty sure I should take them.

  • chronicpain
    chronicpain Member Posts: 217
    edited April 2018
    HapB, from what I read about and know about atypical femur fracture (AFF) side effects, there are a couple reports where even one dose of Prolia for OP triggered it, (but the docs wrote it up because it was such a novelty e.g., I read an abstract where one Chinese woman with no confounding variables got it after one month, note Asian descent women have been shown to be statistically more vulnerable) but this rare side effect is more common (though still uncommon — the stats in my article above incorporate all comers) with prolonged (over 3-5 years) of use. But one should always be alert to new weird groin or hip pain which can be a warning sign . The theory is it temporarily can cause harm through a mechanism of mini stress fractures in a few people and we do not know how to identify those people in advance.

    Bisphosphonates (BP) have not been reported to cause AFF so soon, but due to longer years of use, there are more absolute numbers of patient reports, just the same percentage overall so they are not risk free alternatives. Docs may do a “holiday” period off BPs after a few years in lower risk pts, as the BPs build up in bone, accepted to do and intuitive but not of absolutely proven benefit, but holidays with Prolia, even for dental procedures, are not as accepted (one big name dentist pushes it with no good data) and there is no good data showing it is beneficial in a high fracture risk patient, balanced against risk of OP fractures. When side effects are very rare, it is hard to get controlled data showing changes with various clinical manipulations.

    The other less serious and reversible side effects (other than allergy) like back pain or sniffling or arthralgias, still rare, can occur right after a shot, and half life of the drug is 25 days. Any side effect you see in the insert really needs comparison with placebo, and is not always reported. The one that is very real in a tiny number of patients, especially on high doses as with Xgeva for metastatic BC is acute hypocalcemia with cramps or blood pressure drop, especially in pts not taking their required calcium from diet or supplements before injection.
    I am pretty sure we will have more documented reports of problems over the years, even though sadly overall docs these days have less time for writing up good case reports than they did in the past (less time as they deal with government and insurance mandated paperwork, plus write-ups are more complicated and more of a headache due to various increases in consent and disclosure rules).
  • fifthyear
    fifthyear Member Posts: 29
    edited April 2018

    Not sure if Prolia side effects are THAT rare... It's just the medical community do not see the sufferers as side effect of Prolia but rather the impacts of Chemo, rads etc... Prolia is young drug so it takes time for these effects to surface (and to be believed). My friend had one shot of Prolia and got severe vertigo that needed hospitalize. Vertigo is a rare site effect or Prolia, do search to see. Rare, sure, but when it happens to you, then it is not THAT rare. Taking Prolia knowing these side effects can happen allow you to be prepare at the first sign of the effect and alert your docs. I am not advocate for people to not taking the drug, just be aware that it happens more than docs willing to admit.

  • keepthefaith
    keepthefaith Member Posts: 856
    edited April 2018

    My MO has suggested Prolia to me, but as of yet, I have not taken it. I have dental issues that need to be resolved, but lack dental insurance, so, I will probably get dentures as soon as I can afford to. I know chemo didn't help my teeth! As far as supplements, I take calcium, with magnesium, Vit D and Vit K2. I just started taking K2 recently. My osteoporosis and osteopenia have gotten worse in the past few yrs. I'm not sure if my supplements are helping much. K2 is supposed to help the calcium be absorbed by the bones and stay out of your bloodstream. I hate this!

  • chronicpain
    chronicpain Member Posts: 217
    edited April 2018

    HapB, why do you have “high blood calcium", and how high? People, even with BC, do not get high blood calcium just from drinking lots of milk, if you do that ( very rare exceptions, e.g., massive intake ) and if you drink lots of milk you do not need calcium supplements for prolia. Do you have bone mets, humoral hypercalcemia of malignancy, or primary hyperparathyroidism ( which is not that rare in women with breast cancer , can worsen osteoporosis and can be fixed with a simple surgery?) In none of these common cases does dietary calcium restriction worsen blood calcium ( in the first two it comes out of bone, in primary hyperpara bone, renal and gut absorption). Have they measured your PTH?

    What have they told you?

    There is a separate thread on BCO about the underdiagnosis of hyperparathyroidism, and how it can aggravate bone disease and can be dealt with if docs look for it and not assume every symptom is from BC.

  • chronicpain
    chronicpain Member Posts: 217
    edited April 2018
    Fifthyear, of course everyone should read the package insert about any new drug they take, and any new symptom that follows onset of taking a drug should be considered as being caused by the drug even if it is not in the insert. Dizziness is in the insert for prolia, vertigo is a bit different.

    And of course there is risk versus benefit assessment for taking the drug, balanced against alternatives including doing nothing, and interactions with other drugs and conditions, that should be considered. Docs and pharmacists typically tell patients about the most common or known most serious effects and delegate the rest to the pharmacist counseling and pts, if not mentally impaired, reading the insert. They cannot verbally warn about dozens of rare side effects, as that would be the same as warning about nothing, TMI for anyone to process.
    I hope your friend’s doc reported to FDA online about the vertigo.
  • chronicpain
    chronicpain Member Posts: 217
    edited April 2018

    Keepthefaith, I do not how old you are, but if your bones are getting a lot worse , in addition to your hormonal therapy, post-menopausal OP in at risk pts ( thin, white, older, with or without FH) often gets worse as calcium from diet or supplements and vit D ALONE are not enough to prevent progression ( though they are good adjuncts to anti-resorptive rx with either BPs or Prolia). How bad are your bones now ( t scores) and have you had prior fractures (the major predictor of more OP fractures?

    Inability to afford the dental rx that would be ideal to minimize the rare ONJ risks with subsequent Prolia is a common problem, and meanwhile the bones thin. Going for dentures does not totally solve the problem, as you often have to extract the bad teeth to set up the dentures ( extractions are itself a risk for ONJ and people with dentures getting anti-resorptives, especially if ill-fitting, still have double the risk of those without.

    This 2014 position paper from the American Association of Oral and Maxillofacial Surgeons lays out the treatment dilemmas:

    In CA we have an odd situation where very poor people who do not work at all for various reasons get mostly free dental coverage under Medicaid and can get dental work from some dentists and even new sets of teeth ( often with a wait list) but working people who are low earners but not poor enough for Medicaid do not, However, there are some clinics that do sliding scale work for low earners, often affiliated with dental schools, maybe there are some near you? In any event, be sure and at least treat acute infections, to avoid dangerous abscesses, on balance a more common and greater risk than ONJ.

    If no infection, just annoying and missing teeth you cannot afford to fix, no matter what,depending on how bad your OP is, antiresorptive treatment with BP or prolia may still be a considerstion, balancing risk and benefit.

    No good choices here.

    The link describes that doing a procedure, with antiresorptives on board in OP doses ( not the huge doses used for bone mets) , the risk of ONJ is about 0.5 %

  • keepthefaith
    keepthefaith Member Posts: 856
    edited April 2018

    chronicpain, thanks for sharing the link. Yeah, damned if you do and damned if you don't kind of thing, like so many other issues we face. I had a fracture on my ankle 13 yrs ago, not sure if I was OP at that time or not. I took Tamoxifen for 2.7 yrs. I don't see a big progression in bone loss, but was hoping for it to stabilize the past couple of yrs, at least. 63 yrs old. 58 when DX'd. I would not consider myself to be thin! I was actually pretty surprised with my OP DX. I do take care of immediate issues with my teeth. I have always had dental problems. It seems like a more cost-effective solution for me to just get the remaining teeth pulled and be done. I have a partial now. I have spent literally thousands of dollars fixing and repairing my teeth, just to have those fail later, anyway. I'm sure taking chemo did not help. I told the dentist on my first visit, that when he looks in my mouth, he will think it's a Gold mine....for him, anyway! LOL. Very frustrating.

  • chronicpain
    chronicpain Member Posts: 217
    edited April 2018

    HapB, I hear your worries and frustration! We just do not have perfect options. Docs may still give prolia to pts who have had chemo, rads, or steroids (me in the latter for years though not for BC) because they, (hopefully though sadly not always with the pt.), do a risk/benefit analysis and decide there are no great alternatives to deal with the very real fracture risk of nad OP (and it can also help with bone met prevention and when there are bony mets, in high doses, for bone mets and pain treatment).

    As for ONJ, as I posted above, the reported risk of ONJ even in patients with cancer and their elevated risk (often with chemo or steroids or other factors that enhance risk including major dental procedures, and including those on high dosing) is still only 1-2%, though much higher than the .03 of non cancer pts., or cancer in remission. That leaves at least 98% without ONJ, especially if on the low dose every six months.

    As for the AFF, in the FREEDOM trial of roughly 3500 women, there were only 2 cases over many years, but they are still following more after marketing reports but someone, doc or pt., has to do the reporting!

    I have had a painful and debilitating hip fracture, rib fractures and foot fractures from my steroids, and with my prior bisphosphonates therapy (which can also cause ONJ and AFF) and more importantly exquisite and meticulous fall precautions and using other drugs with risks to allow cutting steroids, none for several years. It is not fun to be laid up by them, very real risks for me. My biggest concern about starting prolia to help prevent BC recurrence, and stopping BPs, was not the long list of rare side effects, because I know so many people who do well, but the possibility it might not work as well on my OP as the BPs and I will fracture again now that I take AI.

    BTW noting the post of the lady who walked dogs and fell and fractured, she is an example of how dogs and small grandchildren who run around unpredictably, or get your legs tangled in a leash, or knock you down, are sadly to be avoided if possible. Same with rushing around people at airports. I have old, mellow cats instead :)

    We need better drugs, but meanwhile there is what there is and we make difficult choices. BC sucks

  • chronicpain
    chronicpain Member Posts: 217
    edited April 2018

    HapB, I understand your treatment regimen is rough, a friend of mind also has triple + and I feel for her, and for you. Mine was nothing comparedwith what you must endure. What stage are you, and if I may ask, how old are you ( of course it is ok not to answer, I am just looking how to best support you).

    Are you scheduled for Prolia every six months?

    Your jaw is not very likely throbbing from ONJ from one dose of Prolia a week ago, as the process of ONJ takes a good while to develop, but rather from something else, or just the post-Prolia rare transient bone or jaw pain that has been reported that goes away. Let's hope it abates, and if nothing else explains it, you can report your experience at in the prolia section. Even if there may be other variables, and mostly only people who have problems submit reports, docs and the manufacturers and pharmacists need to know the whole picture about pt experiences! My first dose was two months ago, nothing has happened out of the ordinary, but I have so much daily pain most days anyway and am used to running to the dentist for every little thing. Today was a good day, however, I walked a bit with DH in the sun, pain only 5/10 moving around and minimal lying on a soft bed.

    AFF on the other hand, per that case report, though very rare ( the Chinese woman) can develop in one month, so I watch, and so should you, watch for odd new groin pains you did not have before. The peak risk of this very rare problem is after two years, four doses. If there is such pain, per the article on it I cited, docs can do bilateral xrays of hips and upper femurs and sometimes see early changes to deal with before a fracture happens, preventing bigger issues.

    If you have doubt about your dental status, or jaw symptoms continue, I suggest you check with your doc and dentist.

    ONJ, BTW, in early stages is easily treated ( see my dental cite), harder if ignored and advanced.

    When I started an off-label medication a few years ago to replace my steroids ( Actemra) I read it had a 1-2% chance of skin cancer and signed the consent anyway because my life was miserable from the pain and the steroid fractures and nothing else was working. Then the next year my sister died of melanoma, and I started watching my skin more and wearing more sun block and a hat. Sure enough, I developed several skin cancers three years later, none ever before. One of them that kept coming back had only a 1-2% chance of complications with the treatment I then had from a very experienced doctor, and guess what — I had the complications. Now the cancer is gone but I have a permanent unsightly facial scar that makes me a little self-conscious but know the alternative was an even more unsightly and unhealthy growing cancer so I have no regrets other than not going for the alternative option of localized facial skin radiation. But then I probably would have gotten the 1% chance of ulceration! Sometimes it is such a frustrating crap shoot.

    Keep us posted how you do. Odds are great your jaw throbbing pain, if from Prolia, will go away soon and long before a decision needs to be made by you and your docs about another dose, balanced vs. alternatives.

  • dpako
    dpako Member Posts: 35
    edited June 2018

    Does anyone know if primary hyperparathyroidism is caused by radiation of nodes in neck?

  • peggy_j
    peggy_j Member Posts: 89
    edited June 2018

    Is everyone taking Prolia planning to take a bisphosphonate when they stop Prolia? I saw my endocrinologist this week; he's the former head of the Osteoporosis clinic at a medical university. Right now I'm still on tamoxifen, but I'm post-meno so I can't take it forever, so we began discussing options for when I stop tamox. The endocrinologist said that when a patient stops Prolia, there is a rapid rate of bone loss (faster than usual) and you end up with the same bone density that you would have had if you hadn't taken it at all. He said there have been documented cases of patients having multiple spinal fractures due to the rapid bone loss. For that reason, he does not recommend a "vacation" from Prolia and instead recommends taking a bisphosphonate when you stop Prolia. I can't take a bisphosphonates for other reasons, so right now I feel like I'm SOL in terms of medical help for my bones. I'm doing all I can in terms of diet and exercise and calcium intake, so this year my bones were stable, but it feels like the calm before the storm....

  • Nugget1
    Nugget1 Member Posts: 3
    edited October 2018
    • Thank you everyone for a lot of great information about Prolia, after all this information I probably will ask my oncologist to postpone Prolia injection, I am not ready. Thank you again.
  • Tassie
    Tassie Member Posts: 1
    edited November 2018 to this stream.  I have had two Prolia shots, the most recent in August.  My body has not been "right" since then.  Back, hip, and thigh pain.  I'm a runner, and I have lost a minute a mile since the end of September.  Something is not right.  Has any one else had side effects from Prolia like I describe?   Could be the shot.  Could be arthritis.  Could be a disk issue.  Could be bone mets.  See the oncologist next week, but curious if others have had similar experiences with Prolia.

  • NoteRed
    NoteRed Member Posts: 59
    edited June 2019

    Hello to all,

    I 've had my second Prolia shot due to osteopenia yesterday, and I have headache and a little upset "tummy" are these SE of prolia? did anyone had those?

  • aterry
    aterry Member Posts: 142
    edited August 2019

    I'm catching this thread late. I'm in the decision making stage facing many of the issues that all of you have discussed above. THANKS for all the information, links and personal takes. I'm leaning "no" on Prolia at the moment, especially after input from an oral surgeon who said Prolia is no safer than Fosamax and my mother-in-law had cancer in her jaw after taking Fosamax so the similarities are a big red flag for me. I saw my onco yesterday and she said lets wait until my bone density recheck in December and go from there (I don't remember my current score). It may be pollyanna of me but waiting is easier than deciding. ;-) :-(