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Prolia (denusab) 6 monthy jabs for osteoporosis

(21 Posts)
Orangutan Wed 07-Aug-19 15:58:42

My consultant has just decided to put me on these jabs. Long story short. I couldn't tolerate the tablets, had various fractures. It was initially suggested that I go on daily jabs, which are basically hormones, and have very little side effects. However, because of the cost it had to go before a committee and my bones were not deemed thin enough to qualify.

Looking on the internet about Prolia feels me with dread. It is primarily a cancer drug. It alters the immune system, causes infections of the skin, respiratory tract and, in some cases has lead to sepsis. Also it is only licensed for two years. After which you are wide open to multiple vertibrae fractures.

Has anyone been on this drug and, if so, what side effects did you experience? Thank you.

BlueBelle Wed 07-Aug-19 19:00:00

I have an annual infusion of Zoledronic for osteoporosis which the nurse told me costs about 14p a go and takes 15 minutes I have no idea if it’s helped until next year when I should have another bone density scan
I didn’t look up any side effects and didn’t have any

Orangutan Wed 07-Aug-19 19:04:44

Thanks Bluebell. But Prolia is a totally different drug.

BlueBelle Wed 07-Aug-19 20:22:51

Yes I understand that it’s different I was just showing you there are alternatives

BlueBelle Wed 07-Aug-19 20:23:49

Why can’t you be on an alternative ?

Orangutan Wed 07-Aug-19 21:30:03

I've been on the alternatives but my bone mass, mainly left hip, is still decreasing. I was offered a daily injection that I would have to administer myself. It had far fewer side effects and offered better results. However, as the daily injections are expensive, my case had to go before a committee and it was decided that my bones are quite thin enough to be allowed it.

Orangutan Wed 07-Aug-19 21:31:34


Luckygirl Wed 07-Aug-19 22:13:26

I was offered this a year or so ago and put it off - but I then jad a spontaneous fracture at the bottom of the femur around my knee; so I took that as a warning and last week I went and had the first of the injections. They do a blood test a week before to check your calcium levels and also kidney function. The osteoporosis nurse gave me a long spiel about it. She said that the most serious potential side effects also applied to most osteoporosis treatments and that I had a 0.001 chance of having these - she compared it to being struck by lightning.

She also listed a number of other potential immediate discomforts that could happen after the injection - so I was bracing myself to feel sore or a bit grotty - but I really have not had any effects at all.

The drug has been in use for some time for other purposes, including treating rheumatoid arthritis I believe, but, if I understand it, the licensing for use in osteoporosis is more recent.

They told me that it could result in a 70% increase in bone mass - which is not to be sneezed at. Also that they have hundreds of patients on it and it has proved to be a successful treatment.

I understand your concern as I shared it; but in the end you have to weigh up the small chance of adverse effects against the potential side effects of having broken bones in need of treatment or surgery; and also the chronic pain that comes with a collapsing spine.

I would strongly advise not going anywhere near google|!

Good luck with your decision.

Orangutan Thu 08-Aug-19 15:33:10

Thank you Luckygirl. The thing that bothers me is the fact that when Prolia is stopped you are at risk of multiple spontaneous virtebrae fractures. I understand that you are then given another yearly jab to try to prevent this. But it still doesn't seem right that a drug to build bone mass can leave your vertebrae so weak.

Luckygirl Thu 08-Aug-19 16:46:16

Not heard that one. As I understand it, when you stop it (10 injections over 5 years), they do regular DEXAs to keep an eye on things and if there is a problem, they start it again.

Check this out from the osteoporosis society:

And you can also download their leaflet on it from the same page. It is worth noting that the potential teeny tiny risk for serious side effects also holds good for most of the other treatments - things like osteo-necrosis of the jaw and spontaneous fractures. It is about weighing up the pain and misery of a crumbling spine and broken bones against the tiny likelihood of side effects.

Like you I was concerned about it, but having made my decision I am just going to bash on and hope for the best. If I do nothing then more fractures will occur for sure, and I do not want that.

Orangutan Thu 08-Aug-19 17:55:48

I was told that it is only licensed for 2 years! I went onto the actual drug manufacturers website and got my information from there. They are an American drug company. I'll look the website up again and get back to you.

Orangutan Thu 08-Aug-19 17:58:48

Hi Luckygirl. The manufacturers are a drug company called Amgen, based in USA.

Luckygirl Thu 08-Aug-19 18:02:56

It is certainly available here for longer - I was told that I would be on it for 5 years. Maybe the licence is different here than in the USA.

Grannyjay Thu 08-Aug-19 19:08:17

I was put on alendronic once a week tablets about ten years ago. When I started taking them my fingers started stiffening and I suffered jaw ache and aches and pains. I went to my go about my fingers and he dismissed it and said oh it’s just arthritis. I read up about this drug and it only keeps your present bone which eventually hardens. Your body doesn’t replace the osteoclasts and you get hard solid bone which can fracture. You should not take this for more than three years as after this it’s pretty useless. My friends mother had been taking it for ten years and her doctor looked it up and said to her your friend is right we must take you off it. I stopped taking it and told my doctor reasons why and she agreed. When the medication stopped my fingers went n
Back to normal and the aches disappeared. The doctor gave me calcium tablets (cheap nhs types) that actually the body cannot use. I changed my diet, eat almonds high in calcium and cut out sugar, alcohol but my weakness is caffeine. I bought a rebounder and use that to strengthen my bones. I would advise not to take anything until you investigate the actual benefits if there is any. My doctor said they just have to prescribe what they have. These drugs give us a false sense of security. My mother in law took them but ended up doubled over looking at her knees. If they were that good this would not have happened. Useless drugs.

Orangutan Thu 08-Aug-19 19:22:48

Grannyjay. Thank you. The way I see these drugs is this: you have a rusty pipe so you put a coat of paint on it. It looks good in pictures, but underneath the rust is still there and eventually, despite the paint, the pipe will continue to rot and eventually burst.

Orangutan Thu 08-Aug-19 19:27:07

Luckygirl. No it's not the case. It is only licensed for 2 years no matter what country you are in. I have looked up this drug in various health authorities in USA, Canada, Australia, New Zealand. I can't look up the rest of Europe as I don't speak the languages. My own consultant at king's college hospital in London told me that the maximum time to be on this drug is 2 years.

Orangutan Thu 08-Aug-19 19:42:48

Sorry, tried to copy and paste but it didn't work.

Luckygirl Thu 08-Aug-19 19:45:17

There is no limit to the NICE licence for this drug.

Minniemoo Thu 08-Aug-19 19:49:18

Friend of mine has these. She's been having them for 4 years now. She's been told that they don't tend to give them for longer than 5 years as a rule. It's been working well for her. Good luck!

trisher Thu 08-Aug-19 20:43:31

My mother was on this for over 2 years. She had a long history of osteoporosis and had had other treatments. She didn't seem to have a problem with it. I believe spine fractures are one of the commonest injuries from the disease. My mother had several. She did live to be 94.

Orangutan Fri 09-Aug-19 15:01:38

Thank you all for your very kind replies. I have decided to book another appointment with my consultant before injection date (28th August) to put my concerns to her. I'll let you all know what happens, either way. I have an appointment with my dentist on Tuesday, which the consultant suggested I do before treatment. It may be the injection is delayed if I have dental work to be done.