Log in
Bone Health
2,172 members790 posts

stopping Prolia treatment

After 3 Prolia injections I have decided to stop. I have had side effects such as very frequent UTIs, chest infection, and severe gum infection after dental work. My Doctor doesn't want to take me off of Prolia because my T score is -4.1 but I am not getting another injection. I am scared to death about getting fractures after stopping. Has anyone stopped Prolia and what was your experience???

30 Replies
oldestnewest

Oh HoneyPooh, I'm so sorry. I can't help as I have never used Prolia, but I just wanted to send you my support. I'm sure someone with more knowledge/experience of Prolia to help. XXX

Reply

Thanks so much for your kind words and support.

Reply

Sorry you’re having problems. If you look on “related posts on the right hand side of this page there are a few posts on this subject. You can also use the search function - click on the word search and go from there. I’m sure someone will be along soon with more informed advice. I have no experience of this but have read that when stopping Prolia you should have another medication lined up to take, with no gap, to ward off rebound fractures. Hope you are feeling better soon.

Reply

Thanks so much for the information. I am new on this forum.

1 like
Reply

I have not had fractures. I had one Prolia shot 2 years ago and am still having immune system and IBS (with severe cramping) and cold and hot flashes. I am well past menopause age. I hadn't had a hot flash in 8 years. 2 weeks after Prolia shot, I was sick 3x or more per week with severe diarrhea, intestinal cramping, cold and hot flashes. I have lost about 12 lbs. Two years later, I have one "prolia attack" per month on average, lasting 3 days. And my IBS is out of control. I have no bowel consistency whatsoever. I would like to join a class action law suit, since Amgen knew some of the immune system/gastrointestinal problems when it released Prolia and the information was hidden on page 14 of a 30 page document on the Amgen website. If you have taken Prolia, it is fairly well documented now for spinal pain, and if you haven't taken Prolia, read all information, especially contraindications.

4 likes
Reply

I am horrified to hear of so much pain ans suffering due to this drug. I am 67 year old having had 4 shots of prolia and due for my 5th. I wont take another injection. I am also fearful of the results of this decision . I have had sever eye infections, shingles. lung infections , sever back pain ,hip , feet ,hand and skull pain. the Muscle spasms have been excruciating. I thought at one time my ankles would break as my feet turned in so much.the spasms go from feet to below rib cage. Bowels have completely changed. I have hot flashes for the first time in my life. so much more ......Something has to be done about this drug.

4 likes
Reply

You are right, zumma, something does need to be done about this drug. What you have experienced is horrifying. There have to be safer, less life altering drugs, than Prolia. As far as I am concerned, it needs to be taken off the market because the side effects are so severe -- and nobody tells you about them or knows what to do about them. I hope the drug passes out of your system soon. It has been two years for me, and although the "spells" of the IBS, diarrhea, and hot flashes which always come together, are occurring only about once a month now, why isn't it out of my system entirely? That is something else they can't and won't answer. I talked with the nurse at Amgen at length and filed a report. Please call 1-877-562-4111 and file a report soon. Also, call the FDA (you can find number on internet) and file a complaint. Those are very important. I am researching to see if there are any class action suits, because it is beginning to look like we may need one. Hope your symptoms ease up soon. Take care, ImmunePoison

2 likes
Reply

Yes I have stopped it after 2 injections and side effects. I researched carefully the rebound fractures - which are very real. I am bridging with Actonel 35mg and my bone turnover markers (PNP1 and CTX) are measured every month. So far 3 months in, Actonel is working and the markers have not risen dramatically. Phew. Endocrinologist will review at one year but I am keen to continue the full length of the risk period after stopping - which is 2 years. Frankly I hate taking Actonel but it is a necessary evil. Bone drugs give me jaw and bone ache. Are you are under the car of a specialist rather than your doctor?

1 like
Reply

Thanks so much for sharing your experience. It has been helpful to me. At this time I am only under the care of my GP and feel pretty alone as he has not been forthcoming with needed information or help.

Reply

Can you ask to be referred? Go to your GP armed with information about the rebound phenomenon and say that you think it is extremely important to be referred to carefully monitor your bone turnover. Nothing to lose by trying. My GP would never have referred me but I asked. In fact I never needed to go on Prolia as my scores were not that bad but she panicked when she thought I had a 37% drop. In fact the machines used to measure had changed!! Moral: be your own advocate and do lots of research. I did neither but sure will in future - as well as finding a new doctor!

Reply

Also make sure you have NO gap with the bridging medication. Start it on the date of your supposed next injection.

Reply

I had a femur fracture after my 2nd Prolia injection and now have an intramedulary rod in my right leg. The osteoporosis clinic did not put me on a bisphosphanate when I stopped Prolia as I was on Actonel for several years & they felt Actonel could have played a role in my fracture as well. I was due for my 3rd shit December 1st,2018. I am now treating my osteoporosis with diet & exercise. I was in fear of the rebound fractures when stopping Prolia so I understand your concern. I wish I had never taken any osteoporosis medication. The side effects are nasty if our body reacts to the medication. I am still working on strengthening my leg. It has turned my life upside down. I wa always very active & I am trying to get back to where I was. I often feel like a china doll waiting to break now & that is a horrible feeling....

Good luck to you with your decision.

1 like
Reply

I too had a femur fracture after my second prolia shot. I will not get a third, hope to use diet and exercise for my plan. I am still recuperating from the fracture,I couldn't put much pressure on it while walking and had to help my leg up when climbing the stairs. This medicine is horrible. I hope it will work its way out of my system. Good luck

Reply

Thank you so very much. Sorry to hear of the experience you have had with this drug. Like you I wish I had never agreed to Prolia. I am leaning toward stopping the Prolia and seek to control with diet and exercise just like you are doing. So I would love to stay in touch and see how you do. Wish you the best in controlling bone health naturally.

2 likes
Reply

Are you sure that the Prolia was the cause of your infections?

Reply

It is actually likely it didn't help as one of the major effects of denosumab is to interfere with some of our immune processes. In fact, before the rebound osteoporosis turned out to be such an issue, it was feared that weakening the immune system would be the most serious side effect of this drug. nof.org/patients/treatment/...

Reply

It has affected my already compromised immune system horribly, and I was already on Immune Gamma Globulin 1x per month to boost my infection fighting antibodies. Unfortunately I had my 1 and only shot 2 years ago, and my Primary Care physician was not given very much information, just samples, at that time. Call Amgen 1-877-562-4111 and speak to them about the immune systems and infections. They even admit that it may cause the body to be more prone to infections, and it DOES affect the immune system. They told me that also.

Reply

Oh HoneyPoo, I am due for my third shot of prolia, but have decided not to take it. I'm sure I'll get flack from my doctor, but I have had so many side effects. Terrible pains in back, joints etc. problems with my hip and joints. Am worried about the possible fracture side effects when I stop, but it's not worth it

Reply

hp: your story is much like mine!

After 3 Injections of Prolia (during an eighteen month period, starting March, 2017), I think I have finally put 2&2 together! With a previous healthy life-style (I am 72, male), over this same time period (18mos), I have developed a few unexplained health problems. After a trip to FL and a lot of exposure to the sun in early 2017, I developed what I thought was a bad sunburn (very blotchy skin which never went away). After a year and two more trips to FL, I finally consulted a Dermatologist 9mos. ago and was diagnosed with Vitiligo (a rare auto-immune skin disease, <5% pop.). Also a freak broken foot in Oct. 2017. I think my problems with retinal tears, which began in late 2016, and ultimately led to a detached retina in my rt eye in Oct. 2017 which left me with distorted vision, were exacerbated by the effects of Prolia. I had over a dozen retinal procedures in 2016-2017. Most recently, I have been diagnosed with Hashimoto's disease by an Endocrinologists (this month). Finally, after frequent muscle cramps (legs) & extremely itchy skin (arms), rashes & blisters, I have decided never to take Prolia again (next inj. due in September, 2018)! I think all these issues are related to a compromised immune system, and lowered healing response. Therefore, I am investigating legal action (against AMGEN and medical practice prescribing this powerful drug). Would you be willing to accept this case?

PS: IL has very "limited" Statute of Limitations (2yrs), so time could be an issue.

BP in

West Dundee, IL

1 like
Reply

how are you doing since stopping the prolia? My story is very close to yours.I am discontinuing injections no matter the consequences.

Reply

BE SURE THAT YOU SWITCH TO ANOTHER TREATMENT ASAP...I CHOSE FORTEO

BUT THERE ARE OTHER OPTIONS.

This problem (early vertebral or pelvic fractures after discontinuation of Prolia)

seems to be the dirty little problem that Amgen was aware of well before the black box warnings came into effect. In the meantime countless sufferers are sustaining unexplainable fractures of the vertebrae, and in my case my sacrum as well.

The drop in bone density (after Prolia discontiuation) with out switching to an alternative modality is well understood and has been for some time. I was never warned of this 1.5 years ago, and as a result am suffering the consequences. When I started Prolia, no warning was given. I would like to poll this group to get some idea of those affected in different locals...i.e Canada/England/U.S./other.

I believe there is a strong case for a class action suit where there were no warnings from the manufacturer or those Doctors prescribing for big pharma.

Reply

From Canada and greatly affected in so many areas. So horrific, its hard to put this into words.

Reply

BE SURE THAT YOU SWITCH TO ANOTHER TREATMENT ASAP...I CHOSE FORTEO

Reply

You need to take something else straight after stopping prolia or you have high risk.of spontaneous multiple vertebral fractures. This happened to me and others...i took actonel. The latest report from the professor who first reported the rebound fracture problem Dr Lamy from swizterland says they now assess the risk of multiple vertebral fractures from sropping Prolia as 1 in 100 to more than 1 in 10 and that therefore Promia should be considered a second line treatment ! Be very carefuk..

Reply

Thank you Prolianightmare for sharing. I will talk with my doctor about taking Actenol.

Reply

Firstly, it's not recommended for anyone under 70 and as someone already mentioned about rebound or spontaneous fractures, the FDA gave out a warning in January 2017 that leaving Prolia off, leads to rapid bone loss resulting in possible fractures.

Reply

Hello, I am 60, have taken 3 injections of Prolia and wished to stop due to all the side effects and quite frankly I did not research Prolia, I trusted my doctor. I am now fully aware of its danger and this was only as a preventative measure!!!

I am now bridging for 6 months with Fosamax 70. I know this isnot great either however my new doctor has reassired me this will cover any rebound effects...

Anyone use Fosamax as a bridge. I was prescribed for 6 months and then I will stop all.

Many thanks for any advice. Clamantine

Reply

Good information as I am considering stopping prolia and suggesting fosamax to my MD. Like so many people I was not educated on this med as MD just said it was to “protect my bones”. Like you I trusted my doctor. Now I have many concerns. Thanks

Reply

I will keep you posted on my progress Melody blue! Praying this nightmare is over in 6 months when I’ll stop the Fosomax. Let me know you status too... how many injections of Prolia have you had? Keep the Faith, the mind optimism is crucial👍.

Reply

9 or 10 injections. Wasn’t counting. Thanks

Reply

You may also like...