Vertebral fractures in Canada after P... - Bone Health and O...

Bone Health and Osteoporosis UK

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Vertebral fractures in Canada after Prolia discontinuation

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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. If you are interested pass the word.

Read more about...

Prolia

20 Replies

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LynneH-197 years ago

Your anger is certainly justified. You need to post your message on the NOF forum, for a wider audience, if you haven’t already done so.

I will certainly take it as a warning not try Prolia when my Strontium R supply runs out.

Best wishes

• in reply toLynneH-197 years ago

Thanks for your response it’s more frustration for me than anger but I certainly worried that there are a lot of people out there looking to go through this I never know why.

I’m not sure what the NOF forum is perhaps you could point me in the direction

LynneH-19• in reply to7 years ago

NOF is the US National OP Foundation. It’s free to join their Forum and although many members are from the US, you also get members from all over the world.

If you google NOF you should find the link. Once you have joined, they send you a daily link which gets you straight in.

Although some of their drug names are different, overall I find it helpful.

Best wishes

• in reply toLynneH-197 years ago

Thanks very much!

LynneH-19• in reply to7 years ago

Try

Https://nof.org

After you join and get the daily email link, there is a long list of postings displayed.

I personally go straight to Active Posts which is found under the main heading on the left side. This gives all the postings in order of date.

Down the left hand side you will find the heading Topics. Scroll to the bottom of these and there’s 4 boxes, which can be useful, especially the first 3.

1 is Posts I started. 2. Posts I replied to. 3 Posts I follow, 4. Posts by my friends.

Good luck

LynneH-19• in reply toLynneH-197 years ago

nof.org. Sorry it doesn’t seem to open here, but it does via Google

jeanetteubo7 years ago

Hi - I have been on Denosumab for 3.5 years and my recent Dexa scan has shown I am now in the oesteopenia range. I am naturally very happy with this- however since reading about this drug on this site I have real concerns for the future. I feel fit and well at the moment and started the drug after being unable to tolerate AA.

I was not told of any possible side effects and as it is an injection administered at the hospital I was not given an information leaflet.

I hope to see the consultant on my next appointment but I am fearful about what the future holds with regard to my health.

I will interested to hear other comments on this.

Kaarina• in reply tojeanetteubo7 years ago

You really should not wait until your next appointment if this is some months away. You need to go onto another OP drug now. It is unfortunate that you could not tolerate AA because this is usually what is offered after prolia OR prolia is continued for a longer time than 3.5 years. Your dexa result has been favourable and I fear for you, that this may be undone and worse, if you do not seek urgent advice. Take with you any relevant information to help your case, that you need to be on another medication. Do let us know how you get on.

lolly647 years ago

Hi Gary that is dreadful I've heard of a few instances myself, it makes you wonder if we should just deal with the condition as it is, it seems this Op is something they feel they can treatment but long term causes more problems than it solves I'm on alendronic acid so I believe that stays in the system for a while after but who knows I don't trust any of them now days good luck for the future and I hope you sort of this out

Kaarina7 years ago

I declined this drug because of the possible side effects of joint pain as I have osteoarthritis so get enough of that anyway. The consultant was fine with my reasoning and then dropped the bombshell about the possibility of suffering with rebound vertebral fractures when stopping this drug. Sounds like I made the right decision.

sweetsusie7 years ago

gary1977: Here's information about a class action suit in Canada:

lawyersandsettlements.com/l...

• in reply tosweetsusie7 years ago

Thanks for the link but unfortunately this class action suit is only in the US

sweetsusie• in reply to7 years ago

Sorry Gary....

NomoreProlia7 years ago

HI,

I live in the United States and had the same thing happen to me, 1.5 years of injections, I quit because of complications and had multiple lower back fractures. Please keep us up-to-date as you make progress in this.

Thank you,

Viazoy7 years ago

This happened to me but I’m in the US

Posy-White6 years ago

Hello Gary I will be following with interest.

I'm in the UK (England) was on Prolia for 5 year made improvements moved into the osteopenia range - all went well until I stopped in June 2017 - Even though the warnings had started to be highlighted these where not taken on in UK until September 2017. No one at the local hospital I was under considered there was need for me to go onto an alterative medication.

31.10.17 I woke with back pains, could not move, get out of bed etc. etc. Contacted GP blood test X rays nothing significant showed up. I did not get any better, routine Rheumatology Department appointment in spite of arriving on crutches and taking about back problems, no mention of Prolia being a concern in fact offered and accepted a top up injection until back problem sorted out!

Went back to GP endlessly finally got to Spinal Triage at the hospital more X rays and scan in January /February 2018 showed 2-3 month old hairline fractures in my spine and multiple osteoporotic collapse of six to eight vertebra. Referred to larger hospital for spinal surgery. Eventually saw a consultant August 2018 told no surgery would be suitable, the damage is far too great for spinal wiring I do not have enough bone to graft etc. In short told there is nothing to be done, I needed to get my heads round what the Consultant called ‘well it's one of those life changing situation!’

Mean while in May 2018 started a complaint against the local hospital. In June 2018 started 2 years of Forsteo daily injections. Have also taken further legal advice, as I am now permanently disabled and unable to work.

Would be good to here from others.... but hope there are not too many people damaged. Posy White

Gary77• in reply toPosy-White6 years ago

I am so sorry to hear of your dilemma. I recently had a procedure called verteoplasy, as wells sacroplasty, whereby a fast setting glue is injected directly into the collapsed bones

preventing further damage. In addition to the Forteo I initiated 5 months ago, I feel some progress has been made. my use of opioids for pain has declined dramatically and I am hopeful that I have started to rebuild bone mass on the Forteo injections.

Luckily I have insurance as the Forteo cost runs around 20,000 pounds.

Unfortunately there are many, who like you and me learned of our conditions the hard way.

DianeBM6 years ago

I have five vertebral fractures after stopping prolia. I am a retired lawyer and have contacted a friend respecting starting a class action. Are you interested? Her firm is looking into it.

DianeBM6 years ago

Thanks evefyone. I see I can order Algaecal which does contain strontium. Is strontium dangerous?

Viazoy6 years ago

I agree and I'm looking for such a class action addressing vertebral fractures associated with delay in receiving Prolia in the U.S.!