Stopping Denosumab Prolia: I would be very... - Bone Health

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Stopping Denosumab Prolia

Posy-White
Posy-White
27 Replies

I would be very interested to hear from anyone who had problems after stopping Denosumab injections.

My bone density increased enormously having taking the drug for 5 years, a part from one or two issues after the first and second injections I had no problems.

I stopped in June 2017 and in at the end of October woke with back pain I felt as if part of my back was no loner there. After a long journey I discovered I had a multiple osteoporotic collapse of 5 vertebra and hairline fractures.

I understand that although in the USA they include a warning in the Patient Information Leaflet in May 2017 and in August the ECTS reported ‘Patients considered at high fracture risk should either continue denosumab therapy for up to 10 years or be switched to an alternative treatment’. It was not until September The European Medicines Agency (EMA) revised their advice – patients either being offered alterative medication or to continue with denosumab.

Posy White

27 Replies
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Kaarina

I am so sorry to hear your story but it does appear to be the case that if one discontinues with prolia one must continue with another OP drug which will more than likely be AA or similar. The doctor I see for OP suggested I go onto prolia but when I saw him six months later I said I would prefer not to because of the possible side effect of joint pain as I have enough of that anyway due to having osteoarthritis. He said he agreed with me and then told me that on stopping prolia there was a possibility of rebound vertebral fractures and one had to either continue with prolia or another OP drug. Sounds like I had a very lucky escape. I have said this before, we and our parents, if either or both suffered from OP unfortunately appear to be the guinea pigs for these drugs.

I am pretty sure there are other members of the forum that have posted that they have suffered like you from taking prolia and stopping it..

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Posy-White
Posy-White
in reply to Kaarina

Thank you for your reply Kaarina, I was happy with the drug benefits, started at one hospital, then I moved and had to change hospitals.

I was not happy with the advice and support in stopping! I did stop in 'the window of confusion in the UK'

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Gary77

I am in Vancouver, Canada a 62. male, but had early osteoporosis and was on Prolia for 1.5 years. I had significant improvement in my Dexa tests, but had to discontinue due to severe skin rashes. I was not told that I should bridge treatment to an alternative drug i.e. Forteo

and within 6 months had fractured 3 Vertebrae and my sacrum in two places.

The black box warning was not on Prolia at that time...late 2016, but studies had surfaced indicating a problem.

We have the markings of a class action suit

as this was a problem that pre existed.

Not sure what will happen in Canada,

this issues is only beginning to get noticed.

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Posy-White
Posy-White
in reply to Gary77

Sorry to hear you also had fractures, would you mind me asking did you have any spinal surgery or supporting physio?

I have complained to my Hospital Trust about the lack of care I received and started the process of raising the issue locally. When I started I did not have any ideas of legal action, I naively thought I would recover! As the days drag on and I have no income, as I haven’t worked since this happened I cannot help but wonder if I’ll ever be fit enough to work again and therefore need to rethink about options.

It would be a challenge to take up a class action suit, but sometimes you just have to do these things!

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gary1977
gary1977
in reply to Posy-White

I am scheduled for sacroplasty (glue injection into the sacrum to bond the fractures)

on Sept 6. As for the vertebral fractures they are compression fractures and vary between 30 and 50%. Glue injections verteoplasty comes with more risk.

My biggest issue is that whenI presented my initial injury in a large Vancouver hospital they completely missed the fractures in the pelvis. It was only because I had a private

MRI done after weeks of pain that they were found. At of cost of $1200.

I would have the sacroplasty done privately, but is a complicated and not risk free,

but when successful is life changing.

I believe that when all of these incidents of early veterbral fractures comes to light

the drug company will be liable. It may not help us, we may provide an early warning to those ahead.

Every effort to determine why these fractures occurred (genetic or otherwise were run by my rheumatologist, and it was he who suggested the Prolia effect.

Gary

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Pippoinu
Pippoinu
in reply to Gary77

Hi Gary,

I am 63 yrs, female also lives in Vancouver Canada, had early osteoporosis, been on Prolia for 3yrs, and thinking about discontinuing this med since I also have this terrible itchy red skin on my back for 3+ months without knowing the reason why, GP put me on Reactine everyday but somehow the issue continues. Other than that, I also got lots of problems with gums and the Periodontist suggests gum surgery, or I will lose lots of teeth. Reading your post about the fractures really scares me, may I know what medication you’re taking now? Back to Prolia or taking something else?

I am sorry about your fractures, I hope it’s okay now.

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HeronNS
HeronNS
in reply to Pippoinu

What I've gleaned from reading is people who must come off Prolia rather than remaining on it (unfortunately) for life, are being prescribed either teriparatide (Forteo) or a bisphosphonate. Teriparatide is a drug which actually stimulates bone growth, unlike the other medications, denosumab (Prolia) and the bisphosphonates, which both suppress the bone remodelling cells (osteoclasts which take away old bone). Forteo can only be used for two years. I don't know how long the rebound effects last when discontinuing Prolia but I expect the issue has been known long enough that there will be information available. Not taking a bridging medication of some sort does not seem to be an option as I doubt any amount of nutrition and exercise can overcome the rebound effect.

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Jayge
Jayge
in reply to HeronNS

I know Prolia stops the old bone from being thrown off but does it stop any new bone from forming at all?

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HeronNS
HeronNS
in reply to Jayge

Prolia was considered a bit of a miracle because people's bone density increased very effectively. So much so that doctors felt quite happy to tell the patient they could discontinue the medication after a couple of years. Unfortunately as we've now found out a significant number of those people then developed "rebound osteoporosis" - a direct result of discontinuing the medication and nothing to do with the original diagnosis. So it would seem that new bone was being formed.

Now we know either a different drug has to be used for some period of time after discontinuing Prolia, or one has to stay on Prolia for an indeterminate length of time, probably for life.

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angryandfrustrated

I want to know how long this the rebound effect is active? Can I ride it out, or is this forever downhill situation? Are drugs my only answer?

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HeronNS

You should call the Royal Osteoporosis Society. They should have up to date information.

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Jayge
Jayge
in reply to Gary77

Since some hAve stopped Prolia temporarily for a few months while getting extractions or dental implants and then returning to their normal 6 month injection, it makes me wonder if those with success may have not had a very poor bone density when they started. Also, maybe those who fractured either had low bone density before Prolia and fractured more easily when stopping. the injections? Worth consuderingz,

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Birdmama

I live in the US. Discontinued Prolia because of impact to my immunity system. Within 4 months suffered 6 spinal compression fractures. I have since undergone Kyphoplasty which did accelerate the healing but did nothing to straighten my spine. I can no longer stand straight. This is a very debilitating condition. My doctor thought we had time for a medicine holiday. I would never recommend Prolia to anyone because from all that I have heard, complications are not worth it. In the US, General Practitioners hand it out like candy and don't pay much attention to possible side affects .

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Posy-White
Posy-White
in reply to Birdmama

I most admit I tend to read the side affects, but unfortunately didn’t know about stopping risk until ‘too late.’ Interested to learn you felt the Kyphoplasty accelerated the healing, thank you for sharing that. I read the Cochrane Review on Vertebroplasty and need to talk to the Consultant before getting a better idea of what to do next as the report didn’t make great reading!

Posy White

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HeronNS
HeronNS
in reply to Posy-White

This rebound osteoporosis has only recently become general knowledge. There will be thousands of people caught in this trap now. Prolia no doubt has a place, but it should no longer ever be offered as the first line OP treatment.

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Birdmama
Birdmama
in reply to Posy-White

Kyphoplasty is similar to the procedure you mentioned but Kyphoplasty is considered a bit safer: both procedures accomplish the same result but they must be done within a limited time frame to do any good. I believe that the timeframe is within 8 weeks of the fracture.

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Jayge
Jayge
in reply to Birdmama

And yet I have read some others who skipped a dose just to have implants, then went back to Prolia successfully. Makes you wonder if those successful ones did not have as bad osteoporosis as others to begin with?

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Allie2013
Allie2013
in reply to Birdmama

I live in the US too and have 10 fractures after going off Prolia at my doctor's instructions. I live in Tennessee. What state do you live in?

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sweetsusie

Posy-White - I wouldn't take any of those bone meds for osteoporosis or anything else for that matter. Sure..they build bones, but the bones are NOT strong...they are porous. Me? I take HRT to stop my bone loss...I'm 70 and hope to be on HRT for the rest of my life...

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Posy-White

Interesting idea to look into, thank you; I have always thought exercises geared to help develop stronger bones was the way forward for me. I’ve always been active so found this an easy to do option along side vitamins and eventually medication.

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HeronNS
HeronNS
in reply to Posy-White

Can't remember if I already referred you to my little essay? If not, here it is:

healthunlocked.com/pmrgcauk...

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k_J53

I was prescribed prolia December 2017 I was very reluctant to take but was advised by consultant and GP I needed it and not to be concerned about side effects. My last dexa scan has shown improvement now I’m worried as iv only had 2 injections. I should have trusted my own judgement and refused it , I had done some research on HRT and it appears to be a better option but my GP said no stay on the Prolia . I have had both wrist fractured some years ago and fractured my pelvis both sides 1 year ago I have also had a spinal fusion done twice 20 years ago . I have severe back pain and hip pains but I always put it down to surgery or bones healing now I’m not sure if it’s the prolia .wish I never started it . I do take supplements. I’m back in the hospital Wednesday to see if my right side fractured had healed I will discuss it with orthopedic consultant get his opinion it would appear if you start on it you can’t come off it . I’m prescribed it for 2 years only no idea why .

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HeronNS
HeronNS
in reply to k_J53

Denosumab (prolia) seemed to give really excellent results for improving bone density so it was thought that if enough improvement could happen in relatively few years it could be discontinued. This is before the rebound osteoporosis became common knowledge. Perhaps your prescribing doctor hadn't heard about it when you got your prescription. It's now being recommended that when people stop taking Prolia they start a different medication until the possibility of rebound has disappeared. The alternative being, it seems, to stay on Prolia for life.

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Jayge
Jayge
in reply to HeronNS

You seem knowledgeable. Do you know which med or meds are being used when it becomes necessary for some to stop the Prolia because if side effects. And, are they just as bad with dental situations?

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Posy-White

Hello k_J53

It is so confusing to know what to do for the best. I hope your hospital appointment goes well. Have you ever talked with one of the Nurses from the NOS helpline, they can signpost to information and be amazingly helpful listening and giving options. Posy-White

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Viazoy

I've written enough about my similar situation elsewhere on this website, but yes, because of changes the doctors made to my appointment last year my Prolia injection was late resulting in multiple vertebral fractures that basically ended my active life. The word "delay" does not appear in patient warnings. The only warnings are against "stopping" or "discontinuing" without advising your doctor. But in my case it WAS the medical office that changed my appointments and there were no warnings on any of Amgen's literature that I was given that would have made me question this.

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Posy-White

Thank you for sharing your news. I am so sorry to learn your life has be turned upside down basically through poor medical care. I have a horrid feeling that you'll be told / have been told, like I was as you have osteoporosis this could have happened at any time and it cannot be proved it was a rebound fracture connected to Prolia. I feel I 'need to know' the likely hood of it happening again, I'm waiting the results of more scans and x rays 16 months down the line to see how I'm doing now.

Coming to terms with what has happened is not an easy journey!

Posy White

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