Denosumab problems

Daisylazy, I wish I knew the answers.  There's an osteoporosis organization in the UK and I know that people on the healthunlocked forum are often encouraged to call their help line.  I expect most countries have a similar organization if you aren't in the UK.  These people should be up on the latest information and will be able to give you some guidance.  If you don't get all the information you need the first time, call again at a different time as a different advisor may think of something else.  All the best.  Do let us know how you get on.

 

My sister was only on it for one six month period and she has not reported any problems and that was last year. Try not to worry. Like Anhaga, I do not know. 

I am wondering if the problems arise the longer you are on prolia and if you come off within three years if it is not a problem. I really think the doctors should be researching more as they have access to sites we do not. I know time is an issue for them and some are grateful for our time spent researching and letting them know so they can address our concerns. 

Maybe have a scan to see how well you have done so far. You might have pulled back from -4 and even to something like -2.9 which would be great.

All the best and try not to worry.

Hi daisylazy Most of these studies were conducted on people who were being treated for bone cancer with these drugs. They would have been given a much higher dose than people receive for OP so try not to worry too much. Speak with your consultant and stefani3 has given you another avenue to try to find the support needed when we find ourself in a position where drugas are our only option. No drugs are safe and even supplements have side effects but not everyone gets them. I know several people who have improved there scores with  prolia. I wish you all the best

Hello Daisylazy, I'm also in Southern Ireland. The Osteoporosis Society have a website, based in Dublin and they sometimes hold meetings in other parts of the country.

On the other hand I think some of the recent problems publicized have occurred after discontinuing the drug at about two years.  The abstract says the two year cut off was arbitrarily decided.  So the logical conclusion could be that the shorter the time one is on denosumab the least chance there is of the rebound osteoporosis.  But that's just my guess and hopefully there is some research out there giving a clearer picture - or will be soon!

It's just that I don't understand how they can pick up things on different platforms, unless our private profiles on Patient are not private at all.  How can they match up the identities?  I double checked my healthunlocked profile, for example, and the identifying private info is ticked as being private.  I did allow the world to know my gender and my country, nothing else.  How could they use that info to find me?

Don't you have ad block installed? 

I turned off the location services and it made no difference. I think our computers etc are wired to be tracked. And we are tracked in other ways too.

THis is a joke, yes ?

That is not what I said.  I am simply pointing out that you appear to only put forward anything to support your argument ( comfirmation bias) rather than look at the bigger picture. I have never been on this particular drug. And, neither have you. But the women who are, have all thought long and hard about it. It is always frightening being on medication and all medication has side effects. When I get time, busy life, walking more than 15,000 steps per day and shopping for my greens I am going to post something that should be of interest to people who have OP. 

Hi, Prolia is a relatively new medication for treatment of Osteoporosis (OP), only on the market since 2010. 

It therefore has not had the benefit of long-term monitoring as have other OP medications. Many research studies have found it to be highly effective in preventing fractures and it is seen to be one of the 'stronger' meds. usually used for patients who have already suffered fractures or are deemed at very high risk of developing them (ie. 'severe' OP diagnosis). 

Prolia, like virtually all medications, has side- effects, there's no 'free-ride' here and the list possible side-effects in their leaflet is long and interesting!   I know some patients have had to discontinue treatment because of side-effects they couldn't tolerate and of others who had had no difficulties at all. 

This is surely not unusual when reviewing ANY meds. I think of those I know on chemotherapy, on treatment for rheumatoid arthritis, on long-term steroids - all of whom had periods when meds. had to be reviewed, stopped for a period, or changed.

So, what's the big problem now? It seems that very reliable research has recently revealed a problem with the widely used Prolia and I've been reading a bit about this.  Apparently,  it significantly reduces your risk of fractures while using it  BUT when you stop taking it your risk "returns to the level before treatment initiation".  

Prolia, it seems, is a 'reversible antiresorptive' treatment and works differently to the way other OP meds.do:

" Bisphosphonates bind to the surface of the bone and recirculate in the local microenvironment long after treatment cessation, accounting for the persistent gains in BMD and continued decreases in bone resorption. Prolia, as we now know, doesn't act like this. Other treatments (estrogen, Forteo) improve and decrease fracture risk during treatment, but bone turnover returns to baseline levels and efficacy for fracture risk lost after treatment is discontinued. Therefore, if Prolia (reversible antiresorptive) is discontinued, a period of treatment with a BF should be used to preserve the BMD and reduction in fracture risk."  

Having used Forteo, (an older med.) myself,  it was emphasised how important is was for me to take a BF for a period after stopping it 'to consolidate' any BMD gains and reduced fracture risk.  Otherwise they would be lost and I'd be back to square one. Now, it seems, we must also do this with Prolia.

It seems to me that people panic easily - problem found with a med. and an  " I told you so" mentality can emerge quickly. Perhaps it's due to fear. But there IS no perfect medication, it's always a 'risk-benefit' equation and many people with OP have stayed fracture-free on meds. that would otherwise be chair-bound and in pain without them. And, yes, many people have side-effects that they can't tolerate and have to stop taking them. 

But let's not throw out the baby with the bath water here!!

 

Very well summed up Juno. Putting the fear of death into people who are only just finding their way in this minefield, is not constructive. While I appreciate that people contemplating this drug should be informed of all the side effects, (as with any drug,) massive breaks in the vertebrae are devastating, life changing and agonising. We donot have the perfect drugs for OP, I think we are all aware of that, but until we do, (and that’s unlikely in our life time,) we have to make a very difficuilt decision with what we have available. I receive private msgs all the time from peple who are so afraid of speaking out against the bullies. I am not afraid so will continue to give help and unbiased advise to all who care to read my posts and private msg me.

Take care