PMRGCAuk

12,624 members • 22,931 posts

Vertebral fractures in Canada after Prolia discontinuation

gary1977•

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.

Read more about...

Prolia

9 Replies

oldest • newest

Posted this responding to a comment you made on another thread: mckenzielake.com/practice-a...

I think once a company is approached they get the ball rolling by publicizing issue to find people who have suffered side effects and want to get involved the class action suit. There are probably other firms that do this too but I happened to know about this because it was in the news a while ago.

I have contacted them, thanks so much for your support and recommendation. Gary

Akin to the fluoroquinolones and the appalling damage that

Here from the support group -

floxiehope.com/2018/06/28/e...

floxiehope.com/2018/07/30/l...

fluoroquinolones are linked to mitochondrial damage, and that mitochondrial damage is linked to many diseases including Parkinson’s, Alzheimer’s, and other serious and severe diseases.

One of them is now removed from the market place, will not be manufactured, but, sadly, the generic version is available. But, is a start - and all down to patient pressure group, started by one patient. Amazing - can be done.

Quote : "Janssen Pharmaceuticals, part of Johnson & Johnson, has stopped production of (brand-name) Levaquin, according to the article, "Drug maker stopped making popular antibiotic Levaquin amid concerns about mental health side effects" published on the Indianapolis ABC affiliate RTV6 The Indy Channel. Janssen/J&J stopped producing both oral and IV Levaquin in December, 2017."

“Never doubt that a small group of committed people can change the world. Indeed it is the only thing that ever has.”—Margaret Mead

I do not recall ever being told about this. Does this mean you have to stay on Prolia forever in order to avoid these fractures.

It is a relatively new finding - and yes, the recommendation at present seems to be to remain on Prolia or switch to a bisphosphonate.

Google "rebound fractures denosumab" to find a load of links - they are all the research reports so pretty heavy duty I'm afraid. This is a bit more comprehensible:

academic.oup.com/jcem/artic...

But the bottom line is: speak to your doctors and don't accept being fobbed off.

Either was I Nap 1. I was told by both my GP and rheumatologist last November that I would only be on it for 3 years. I specifically asked that question because I hate medication if I don’t need it. I had my first injection in February this year, then started seeing posts about having to stay on it for life. I asked my rheumatologist on my next visit which was in April if he had heard the “rumours” about this, and he agreed that I would need to stay on it ...or something else...for life. Annoying to say the least when I had specifically asked how long I’d have to take it because I’m also on prednisone for a few AI diseases. I had done what I thought was good research on this Prolia and I didn’t read anywhere about “life” until someone put a post up on a forum about it. I have my second injection next week. I guess it probably wouldn’t have changed the outcome, I have severe osteoporosis, terrible t scores and high risk factors, but it worries me greatly. Everyone including the dentist knows how ONJ can be a side effect and that is my biggest concern...apart from now not being able to go off it. I wasn’t happy to hear all of this AFTER taking it, that’s for sure.

I’ve switched to forteo with zero side effects and the higher potential for success...Cost is exorbitant and but give the cost to my body of being on Prolia I’ll take my chances

lawyersandsettlements.com/l...