denosumab

[Bett50]

my doctor is talking about putting me on denosumab as a next step after Risedronate. I would like to hear of anyone’s experience of having this drug. My Dexa scan shows a significant decrease in T scores while taking risedronate so that obviously hasn’t worked for me .

[MWZ3]

Know that there are issues with Prolia. You can’t just stop for one thing. I’d research carefully before making a decision. What are your tscores? If they’re just around -2.5 or so I’d try some natural things first with diet and exercise.

[Sunseaandsand]

Hi Bett50,

You are more than likely to hear a lot of off putting remarks to your question. ( mostly from people too frightened to even try it themselves)

There are many people who will not try the treatments for themselves because of the things they read from others. ( Very sad)

I can even say myself that after one injection of Denosumab I did not have anymore owing to side effects ( I am sensitive to medications) this though will not stop me having another try at it in the future if offered to me.

We can try the treatments and if we have problems then we can choose to stop or continue with them.

You have said that the Risedronate has not worked well for you. We who have had the experience of fractures know the pain and suffering they bring with them.We have to do whatever we can to prevent them.

When we are at this stage, diet alone will not be sufficient, and as for exercise if you are anything like me you will not even be able to !!

Denosumab has been shown to give brilliant results and it is a treatment that you can stay on long term.

I find the ROS nurses on the helpline give honest and non biased opinions they are great at listening and have many years of experience, if you give them a call I’m sure they will answer any questions you need to ask x

[Bett50 in reply to Sunseaandsand]

Hi Sunseaandsand,

Thank you so much for your thoughtful reply.

I agree exercising is not really possible apart from walking , which I try to do when possible.

I am most concerned about the rebound fractures if I stop taking it . I know I would need to go back on risedronate or similar immediately. I like the idea of 6 monthly injections as opposed to regular medication.

I think your advice of speaking to the ROS nurses is a good idea & I will call them for advice . It is such a minefield trying to find the right thing to do & GP’s often don’t have sufficient knowledge to offer guidance.

[Mavary]

Hi I’m on Denosumab and have been for three or four years now. I’ve not got any problems at all with it.

[Bett50 in reply to Mavary]

Thank you for your reply . It’s reassuring to hear from someone who has been taking Denosumab for several years without problems.

[Posy-White]

Hello Bett50

I very much liked Sunseaandsands reply, Denosumab is a strong drug and has caused problems for some people. Some of the issues have been caused by rebound fractures when the medication was stopped without an alterative bone medication in place; this issue is now well known about so it shouldn't happen! There are a number of positives to be said about the drug - Prolia Denosumab inhibits the cells that breaks down bone, helping to prevent bone loss.

I was first on Denosumab for 5 years T scores (spine ones) went from -3.1 to -2.3 (this being no longer in the Osteoporosis range, but the pre range of Osteopenia) The only issues I had was the first two injections I hadn't drunk enough water (for me) and had cystitis for two or three days after the injection, this was resolved by drinking more water the day before and for two - three days after. Since then I have been on a couple of other bone meds but I'm now back on Prolia (Denosumab).

It's hard to know what to do for the best, when I have had to change bone medication or needed support in managing my bone health I have always found the ROS helpline nurses very helpful. With their support and signposting I have felt confident in attending appointments, changing meds and generally feeling empowered about my bone health.

I hope between peer support, ROS information & support your able to go back to your doctor feeling as confident and empowered as possible.

With every best wish,

Posy White

[Bett50 in reply to Posy-White]

Hi Posy, many thanks for your helpful reply . I am reassured to hear from people who are taking Prolia & that it seems positive providing sensible routines are followed, like drinking plenty of water. Thank you for taking the time to reply to me & I shall ring the nurses at ROS for further advice.

Many thanks Bett

[MaggieSylvie]

I'm just about to start with denosumab (in 3 weeks). Stopping the alendronic acid now. I'm wondering if I should start the last strip on Sunday or return the whole pack to a pharmacy. I hope the injections don't have side effects.