New discovery in bone formation process that impacts on the taking of Denosumab

[Alchemy8]

sciencedirect.com/science/a...

This was reported in Vivian Goldschmidt's (and explained to the laywoman!) useful site: saveourbones.com/scientists...

[PMRpro Ambassador]

I do appreciate their opinion that looking after your bones is better than using drugs to sort out a problem and agree wholeheartedly. However - that doesn't help the people whose bones are not in a good state!! But it is good that it has been worked out WHY the rebound loss of bone density occurs.

[fmkkm]

Thanks, that is very good information.

[Hobbitses]

Has anyone on the Forum tried this course? I’ve had my first Denosumab shot after much agonising...

[HeronNS]

Interesting. So now we know why stopping denosumab once started is so fraught. Now will they consider withdrawing it from the market???

[PMRpro Ambassador in reply to HeronNS]

Why? It works very well to improve bone density and as long as they KNOW what the problems are, they can be worked round. My husband had it in the autumn, he couldn't use any oral options, and it was very convenient for a frail person. They know that they need to switch the patient to ordinary bisphosphonates or continue with the denosumab to stop the problem.That's a bit like saying pred should be taken off the market.

[HeronNS in reply to PMRpro]

It has been given to people who should not have received it. Fine, reserve it for those who have no other option.

[JGBH in reply to HeronNS]

Absolutely agree! It’s damaging...

[JGBH in reply to HeronNS]

Unfortunately they’re still pushing it in the knowledge of the damage it causes! I couldn’t have bisphophonates but they have the same problems using different pathways.... Unfortunately there’s no cure for osteoporosis.... and a cure would stop big pharma from making money! Forgive me for being somewhat cynical...

[JGBH]

Many thanks for the most important information and the links to the websites.I am someone who is a victim of Prolia treatment! When I started this treatment there was very little one could find out. I trusted the consultant who recommended this treatment. I was ok while having the treatment but then I had to stop it before undergoing extensive dental treatment. When I contacted the osteoporosis clinic to inform them and my GP too, No one said I would get serious rebound fractures! So not great help from medical people. I didn’t know this. However, my health deteriorated within a year post treatment... I thought it was only due to my rheumatoid arthritis (for which I was injecting Enbrel once a week.... and this stopped working after 14 years of success and near normal life.... that’s interesting now I have read the links). I had 2 total knee replacement operations in 2017/18. I have never recovered properly since then and my osteoporosis is much worse. After much pain I requested to have an MRI scan and the results showed I have an insufficiency fracture within the sacral alar with associated moderate oedema suggesting a fairly acute fracture. Extending into the S 1 foramina. There is evidence of some bilateral hip effusions with a mild degree of synovitis . There is a degree of tendinosis around the gluteus medium tendon.

I can barely walk, am losing my mobility yet up to a year or so ago I could still do moderate walking and some gardening, which I can’t do now.

The osteoporosis consultant (seeing her next Tuesday) is keen to restart me on an osteoporosis drug, she even suggested I should go back to Prolia! Incredible! I refused. Am not keen to start any osteoporosis drug treatment because they make matters worse as one cannot stay on them for too long... and actually they do not give back strength to the bones and people do carry on having fractures while on the treatment.

So this is my dilemma.... My lifestyle is very limited. I am losing my independence. Am 75 but was always very active and busy while my RA treatment (Enbrel) helped me. Had to stop using Enbrel and have tried 3 new biologics since... 2 didn’t work and am hoping Tocilizumab will eventually work for me regarding the RA. Unfortunately my pelvic fracture cannot be repaired and I have now lost my mobility. It’s atrocious doctors still carry on pushing such dangerous drugs onto patients! It’s all to do with big pharma and greed!

Sorry about this long post....

Best wishes.

This was my response to Alchemy8...

[PMRpro Ambassador in reply to JGBH]

Prolia DOES build bone well - and they now know about the rebound problem which they didn't when you first put onto denosumab/Prolia. It lasts for 2 years post-discontinuation - and it seems that using normal bisphosphonates probably prevents the problem - or you continue the denosumab. The problem appears to be in reimbursement for bisphosphonates in countries that work on an insurance-based funding so maybe it is less Big Pharma and more Big Insurance ...

[JGBH]

Am afraid I have to disagree with you on this point! I am paying the price for such a dreadful drug. Have you read any research done by a Swiss professor (with collaboration with other researchers)? Can’t remember his name at the moment, sorry. Also the links indicated by Alchemy 8 explain very well what has been discovered regarding Prolia. As for bisphosphonates I can’t use them as already explained. It might be ok for some people who do not have reflux problems and are taking PPIs. Also, one can’t take these for ever, so the rebound problem will occur.... I have heard from people who have had fractures, especially spinal, while on these treatments. So really this doesn’t work and give a false sense of security. I certainly will not have anything to do with Prolia again. Wish I had known about this problem before starting...

Indeed, WHY should such treatments be used when they don’t know what debilitating side effects will be? They OUGHT to wait and see long term what serious side effects might me. It’s not ethical to use people as guinea pigs... as has been the case.

How can I get my mobility back now after this disaster? I now have to live with this problem, I really didn’t need that on top of other health issues.

It is a well known fact that pharmaceutical companies are in it for the profits.... sorry to disagree. One has to suffer from something to really understand the consequences of the use of a damaging drug. I am not the only one unfortunately.

[PMRpro Ambassador in reply to JGBH]

If this is directed at me - yes I have read it. I have also read a lot of the other stuff too. I'm not supporting its use without good justification as the Swiss group also appear to - but my husband is on denosumab and given the change in HIS physical ability after a minor fall in January 2020, we'll take the risk of the denosumab for life. He hardly climbed mountains before - but he is entirely dependent on me now and can't walk more than a very short distance. He only leaves the flat to go to hospital appointments. I'm aware of both sides of the coin - I only wish I weren't.

[JGBH in reply to PMRpro]

Yes, PMRpro, I was responding to your post. Not sure what’s happening because I clicked on reply to you... the same thing happened for my reply to Alchemy8 but didn’t show the names. I presume your husband is older than me, although that doesn’t make it ok nor easier and more acceptable. He’s lucky to have your support although very hard on you.... I can assure you it’s so hard trying to cope alone. My family do not live close by to be of support from time to time. I can’t even drive myself anymore, not since December last year so have to rely on the kindness and generosity of the volunteer drivers to take me to my surgery and hospital appointments, they bring a wheelchair. This is the real damage caused by Denosumab! The worst drug I know of in my case. My freedom has been curtailed too soon. This debilitating condition makes me feel 10 years older at least. It’s restricting my quality of life, my life really, what’s left of it. Not being able to travel alone again when it becomes possible again to do so. It’s like an “end of the journey “...

What I find difficult to understand is that NOW they know what the problem is they, nevertheless, carry on using it. Surely that’s totally unethical. It should be stopped...

I believe people need to be better educated in proper nutrition for bone health (as well as general good health), exercising and so on. The problem is people seem to eat unhealthily more and more.... more take aways etc. Although I have always tried to eat healthily most of the time, I have have too many health issues, RA being one of them since I was in my late 30s.... so had to take so many drugs and steroids for years! Had to go back onto steroids since August 2018... am on 10 mg p/day now and my rheumatologist wants me to reduce by 1 mg/day for a month from now and carry on until I can come off steroids.

Unfortunately there’s no easy solution because there is not a proper treatment for osteoporosis yet. I doubt there will ever be one because then big pharma could not make more money... Also it’s rather complicated.

[PMRpro Ambassador in reply to JGBH]

"I presume your husband is older than me,"

I fear not - he isn't 70 yet. And without denosumab the chances are it would get worse.

We live in Italy, our daughters are in the UK but living there wouldn't help much because they live far apart, both work in the NHS and couldn't drop everything and the one I could live with lives too far from a hospital for someone as frail as he is - here is ideal, an ambo is here in 10 mins if he falls at night - I can't lift him and he can't help. If he needs to go to hospital it is only a 10 minute drive. I doubt he could travel far even with me never mind alone.

What I'm saying is that he is exactly the same position as you - but it was nothing to do with denosumab.

[JGBH in reply to PMRpro]

So sorry to hear your husband is so young and having such difficult health problems. My heart goes out to you and your husband. It’s reassuring you are getting such a great service from your local health service in Italy. I don’t think (might be wrong) we’d get this kind of service in the UK at the moment, so it’s lucky you live where you are.

Obviously his situation is different from mine. Glad he was helped by Denosumab but unfortunately NOT my case, it’s been a disaster as it has been for too many people.

Sending you courage. Take care. 💐

[PMRpro Ambassador in reply to JGBH]

I doubt we would get anything like the support in the UK - which is why I'm intending staying here as long as I can ...

[JGBH in reply to PMRpro]

I think you would not get such a good support here, as you say! Those days have gone a very long time ago. Any Carer only comes when it suits them... Am surprised you’re thinking of coming back here.... Perhaps it’s to do with having family around you as you get much older.

[PMRpro Ambassador in reply to JGBH]

There is bound to be a time when I can't reasonably stay here - but it will have to be a pretty parlous state!! I have no desire to go back to the UK - I prefer the weather here apart from anything else

[JGBH in reply to PMRpro]

I totally understand! The UK, especially since leaving the EU is not the pleasant place it used to be, regardless of the weather.... not a pleasant atmosphere... It's very sad. Take care.