Bone Health
1,700 members584 posts

Stopping prolia

I received my first injection of Prolia early June. I have had some side effects and decided not to take anymore. My question ( for those who have taken Prolia) is have you gotten any adverse effects from stopping the drug. In the pamphlet it says that your bones go back to whatever condition they were in prior to shot. I'm wondering if I can expect anything else that's not mention. I'm mostly worried that my bones will be worse than before. Calling Amgen doesn't help. They just read from the general information. Not layman terms.

Thanks for any replies. Barbara

44 Replies
oldestnewest

I haven't taken it but my dr. wants me to. Just curious what you're side effects were? My dr. Says there are no side effects.

1 like
Reply

Hi DH65

There are possible side effects: buckshealthcare.nhs.uk/Down...

"The most common side effects include urinary tract infections, chest

infections, rashes, constipation, sciatica, limb pain and cataracts

(cataracts were only reported in men using Denosumab for prostate

cancer). Cellulitis (infection of the skin) and eczema are uncommon

complications.

Rare side effects:

Osteonecrosis of the jaw (ONJ) - this means that some of the

cells in the jaw die. The majority of the reported cases of ONJ

followed dental procedures such as tooth extraction and many also

had signs of infection around the tooth.

A typical (unusual) thigh bone fracture - this is a stress fracture of

the middle or top of the thigh bone. These fractures are usually

preceded by thigh or groin pain which is worse on standing or

walking. You should consult your doctor if you experience new

thigh or groin pain while on treatment.

"

Reply

Thanks kaarina. I actually was asking about side effects if you STOP taking Prolia after one shot. I have read about all the possible side effects when your on Prolia. I'm just wondering what to expect when I don't continue on this drug. I've only had one injection, but won't have another. I'm sure there are other people who have stopped this drug too. So I was looking for any feedback on stopping Prolia and any possible negative side effects.

Thank you for your reply.

Barbara

Reply

Hi Batbara

Ooops, sorry. I have heard that side effects from Prolia often do not go immediately on stopping the injections. I have also read that one really has to choose another drug if stopping Prolia. It has been suggested to me that I start on Prolia as SR is being discontinued next month but at the moment I am strongly veering on refusing this infusion.

Reply

I think you are fine after one shot. Find other means such as nutrition and exercise. I am trying to stop after years because it has compromised my immune system.

Reply

Read all the literature. There are many problems including jaw fractures. Even common dental procedures can be problematic. I am trying to get off as it has really compromised my immune system. The doctor that started administering to me didn't tell me anything and it has been several years. I would not be shocked to see one of those class action suit adds on TV!

Reply

Hi birdmama, it's pretty disgusting how doctors withhold info on this drug, or they are really just ignorant because they only know what the drug reps are telling them. My doctor didn't tell me all the side effects either. Usually I research a drug before I agree to take it. Unfortunately this time I didn't since I have been hammered for years by all my doctors. I also chose prolia because I'm limited to drug I can take because of other health problems.

I haven't had too many aches and pains now. Just lost some hair, but that's the least of my problems. Would give up all my hair to have health back.

I agree with you that there will probably be a law suit against AMGEN in the future. They should sue the FDA too for approval of this drug. They have deep pockets and all these drug companies are so powerful due to money. It's sickening!

Hope you don't have any bad side effects due to halting prolia. Wish you the best.

Barbara

Reply

Hi, Barbara I had 3 prolia injections and then stopped because I constantly felt or was ill. I also had pain in my joints where I had problems using stairs. I never had this before the shots. Now that I have stopped I have pain in my lower back, hips and knees. Do you know whether there is calcium depletion in your bones once the prolia is stopped? I can't get any answers and I am worried about fractures.

Jan Wiley

Reply

Sorry Jan, don't know the answer. Unfortunately if you call Amgen and ask for information, they are very vague and not really helpful at all. Makes one wonder just how much they know about this drug that they are promoting. Scary!. Wish all of us luck going forward!😁

Reply

From what little I have read, stopping denosumab (Prolia) may well lead to rapid reversal on bone mineral density (BMD) and may predispose a person to fractures again. If denosumab (Prolia) is to be discontinued then alternate therapy should be considered to prevent the loss of the gains in BMD with denosumab.

Have you called the helpline at NOS and asked a nurse this question?

Reply

Well I made my decision, no more prolia. I haven't decided on an alternate drug. Just hoping everything goes well, and no broken or fractured bones.

Reply

I agree with Kaarina, you should talk to NOS. However I think you need to trust your own instincts regarding these heavy duty drugs. Whatever you do in the future, for now please do everything you can to feed your bones and encourage them to grow strong. Eat the right foods, take a few supplements, especially the things which aid calcium absorption, like Vitamin K2, and D3 of course.Make sure your magnesium level is good. And appropriate exercise, including things which maintain and improve sense of balance, as falling is a much greater risk than low bone density. Nordic walking is fun and beneficial if you can manage it, and tai chi is good for improving balance as well as, apparently, encouraging bone density.

With regard to food, studies are showing the most commonplace foods can improve bone density, things like prunes, and yoghurt!

Reply

Hello I have had one injection Dec 26th . I am due for number two in june this year.. I will not get it.. I have been so sick.. severe muscle and bone pain.. Non stop respitory infections , blisters on my feet and hands mostly feet, insomnia and over all feeling like I have the flu.. in my support group a lady told me her doctor called the manufacturer and they said if you stop even after one shot you have a 50% increase of fracture of the spine and most suffer 5-7 fractures of the spine the first 6-12 months.. I don't know what to do.. I have yet to have a fracture.. I was told by my doc it just made you more at risk but not like that.. But she also had NO idea of how terrible the side effects could be.. I am actually really mad about that. I would love to know more about quitting because I really do not want to take that second shot in June

Reply

I don't believe stopping after one shot should be a problem. Call a rheumatologist. They usually treat Osteoporosis.

Reply

Hi Cartam97 - did you stop your Prolia injections in the end?

Reply

Absolutely! no way ever again. And my bones got worse while on them..

I am now very fragile but doing all natural.. I will never do bone pharms again

Reply

I currently have a back injury .. hoping it is . muscle thing. But i only took one of the shots.

Reply

Hi Cartam97, good for you being off it. Hoping your back injury is muscle only. Are you taking any other drugs? Or just using diet and exercise? Wishing you success! It’s such a terrible dilemma ...

Reply

Sorry but I just read your earlier post now where you said no drugs.

Reply

I just had a recheck with an endocrinologist following up on multiple lower back fractures that occurred without injury. I told her on my first visit I was suspicious that it was due to my stopping my Prolia injections. I tried Prolia for 1 a year and a half (3 injections) but the side effects were to much. I had been off of it (with no other medication to replace it) for about 7 months. On this visit, she told me that she had just been at a conference where they were told that multiple lower back fractures are showing up as a common result of stopping Prolia with no other drug started to replace it. I was not given this information when I stopped, and she said it is new information. I am a healthy and active 54 year old woman, and as I mentioned there was no injury or fall that brought on the fractures.

I think this drug will be showing up in class action law suits. Get all the information you can before making any decisions.

Reply

Hi NomoreProlia,

I am sorry this happened to you. I was told this by an endocrinologist recently. I had already discussed with him that I did not wish to take Prolia because of the possible side effect of joint pain, as I have enough of this anyway suffering with osteoarthritis. He agreed with me, in my situation and threw in that gem at the end regarding rebound vertebral fractures, on discontinuing Prolia. :(

Reply

Hi I suffered 6 vertebral fractures plus sternum and rib fractures which occurred with no trauma when I stopped taking prolia. There was no warning this could happen . I am only in my 60s and now far worse off. This is a dangerous drug and there is a cover up from the drug companies. Trying to find others for advice on treatment and compensation and to warn others. Needs to come off the market asap

Reply

That is awful. I am sorry. I understand when one stops prolia one has to continue with another OP drug to hopefully prevent these fractures happening. I am not keen to take any of the OP drugs. They all appear to have terrible possible side effects. The only one I took was strontium ranelate and that was withdrawn last year. I never had any problems that I was aware of, with this drug but there are other patients that suffered through taking it.

Reply

I agree. Very dangerous drug. Nig Pharm don't care about us.

Reply

Hi.Exactly the same thing. I had 6 vertebral fractures rib and sternum spontaneously. I stopped prolia and this a known side effect that they are not warning people about. This is actually a cancer drug. You cant stay on it fir too lo g because of potentisl femur fractures etc. But if you come off it your body explodes... it needs to be banned..

Reply

HI, and thank you for the information. That's pretty scary news.

I wonder if the makers of prolia is going to add this information to the side effects list.

How does one know they have lowere back fractures, and how are they treated. You must be so upset, I really feel for you.

I took only one shot 6 months ago. I really don't want to go on any other drug. ( take enough for other reasons.)

What have you taken to replace the prolia.?

Thank you for sharing your experience. I'm sorry it was a better outcome.

Barbara

Reply

Thank you Barbara for your response. I found out about the fractures after going to PT and not getting relief from the intense pain. The PT requested the x rays and found the fractures. Unfortunately there is nothing they can do to repair the fracture /prevent other injuries. I did a lot of core strengthening exercises and that and time have helped tremendously. Another lady responded to my post, saying she read about the rebound fractures as a result of stopping prolia, so hopefully the information is getting out there. I haven't checked their website myself yet.

I started using fosamax since then, and am due for a bone density test this coming summer, so don't know any results as of yet.

I am sorry to hear you are dealing with other health issues.

I plan to watch this website to keep informed of other users issues.

Take Care

Reply

This link may be of interest to those on Prolia or who have just stopped this medication.

ncbi.nlm.nih.gov/pubmed/287...

1 like
Reply

Hi kaarina

I did read the info that you sent. Once again , I cannot find anything pertaining to stopping after one shot of prolia. Maybe I'm wrong , but common sense tells me that the possibility of fractures shouldn't be as likely with just one shot. Then again my common sense is may not be the best thing to rely on, since I chose to take prolia to begin with Lol!

Thanks so much for any info and input you put out to us😄👍

Reply

I tend to agree with what you are saying regarding less possible fracture damage may be caused with only one prolia shot, Batbara. From what I am given to understand the information about rebound fractures is pretty new.

We have to try to make the best personal decision with very little information to go on which is reliable as no one appears to know what these drugs do to one in the long run as the research is not there. Please do not beat yourself up about agreeing to take prolia. We are a bit in the dark with this OP malarkey and everyone's situation is slightly different.

I note you are not going to take an OP drug now and deal with it, via exercise and diet and supplements. At least you have made a decision.

I am going down that route too in the very near future. The doctor I see at the endocrinology dept for my OP appears to agree that it is OK for me to do this. My t scores are not too bad, the risk of a major osteoporotic fracture is 13% and 0.9% risk of a hip fracture alone in the next ten years (FRAX calculation). Apparently both these calculations are below the recommended treatment threshold according to NOGG guidelines, so he tells me.

So, touch wood....... and here's hoping I have made the right decision for me.

Reply

I don't think one shot would have an effect. Also, all the work the injection is doing diminishes gradually during the six months to nil at end.

Reply

That was a very good article but there is another shown that is really startling of how much bone you lose afterwards, not just what you already had lost. This makes me sick.

ncbi.nlm.nih.gov/pubmed/289...

Reply

I have taken ProLia for over 2 to 3 years and the only side effect I have had is dental problems that have caused infections in my gums. I don't have dental insurance so not sure what I will do but I have stopped the shot to clear up the infection. My bones are in bad shape because I had no idea I had osteoporosis and osteoarthritis until I broke a leg. The surgeon said my bones were as brittle as a 90 year old. I have also lost a ball and joint in my hip which is bone on bone. I didn't have it fixed due to no major pain and the extent of repair required to fix the hip area joint. It worries me to stop it but I don't want to lose all my teeth. I'm sick over the whole mess

1 like
Reply

I had taken the 3 yr. limit (actually a little longer) of Fosamax when Prolia came out. The ad says it builds bone. My endocrynologist recommended it to build bone. I had no side effects and there was improvement on left side and none on right. My last visit this month she informed me I had been on it 3 yrs. and need to stop as it can have problems taking it longer and would cause having some of the side effects but they will have to put me on another drug which don't do the same thing as denosaub. The other endocrynologist explained how it works (doesn't sound like building) - he drew a diagram showing that bone dies and is replaced with new bone. As you age and have osteoporosis, the bone dies faster than the replacement that also has slowed down. The drug slows down the absorbtion (dead bone) so that new bone catches up (doesn't sound like their ad that it builds bone).

Now I find that you can't take it longer than three years (even though some articles talk about longer); when you stop you are in danger of having real problems; when you stop, the progress you've made not only disappears, but significant bone is lost according to this study ncbi.nlm.nih.gov/pubmed/289...

I go back in June and will discuss next plan and wish I had never taken it to begin with as I may not have been worse off. They just keep telling me not to fall so I must have very bad bones.

Reply

I get told by the orthopaedic surgeon at my appointments and the endocrinologist I see for my OP, not to fall. Easier said than done. Of course I do not go out intending to fall but unfortunately sometimes it just happens. :(

Reply

I have had 5 spontaneous vertebral fractures after stopping Prolia 10 months ago. My doctor told me I could discontinue it . No you can not. You get severe rebound bone loss almost immediately if you discontinue it. I had two shots over one year period and had constant pain in my arms and legs while on it. That’s why I Stopped taking it.

Reply

Wish I’d read this before I ever started Prolia. My shot was delayed for a few weeks on account of one doc leaving and another coming in. Three painful vertebral compression fractures and months of pain. Working with physical therapist to rehab myself but maddeningly slow. Spinal curvature and protruding belly and loss of height bad enough. The pain is intolerable.

Can anyone advise on how to get off this drug safely?

Reply

No they dont go back to the way they were.

Reply

Hi Barbara,

I have the same concern but have had now three injections before now finding out about how harmful this drug is. God bless you Barbara.

Reply

Would getting a prolia shot 2 months later, make much difference as my current insurance plan does not cover the2nd injection

Reply

I stopped taking prolia after 4 injections. 4 months later I picked up a heavy load of snow while shoveling. 5 of my vertebrae in my back fractured. I always lifted heavy stuff before prolia. I'll never have the same back again. Now I live with back pain. I advise everyone not to take it.

Reply

Same happened to me after a short delay in getting shot. My whole life is changed. Wish I’d never started!

Reply

my “side effects” were three fractured vertebrae that happened because a change of doctors caused a delay of about three weeks in getting my Prolia shot.

The pain and disability for the last eight months has been awful. Neither Amgen nor the prescribing physicians have anything to offer besides pain pills. Bad enough to have a broken back; I don’t need a monkey on it too.

Reply

Barbara, Please do not stop without a safe exit plan. As you may have seen on my other posts here, I’m in my eighth month of pain and a good deal of disability (some of which will likely be permanent) from fractures resulting from a short delay getting my Prolia shot. I have spoken with Amgen several times asking if they have a protocol for getting off Prolia safely. Their only answer is to “ask my doctor. And so far my doctors only advice is to consider going on Reclast, a drug that sounds even worse than Prolia.

I would Be grateful to hear from anyone on this forum who has been able to get off of Prolia (after several years of being on it) without major problems. I would like to know how they did it.

Reply

You may also like...