Raloxifene

[Nuthatch]

Anyone any experience of taking this?

[Hidden]

I wondered if you had see the ROS factsheet about this drug? Here is the link incase you wanted to check it out. strwebprdmedia.blob.core.wi...

[Nuthatch in reply to Hidden]

yes thank you, it was an ROS nurse who told me about it!

[Bev53-SB]

I have been taking Raloxifene for 3 yrs. I haven’t had any side effects and after the first year there was a slight improvement in my spinal bone density. It doesn’t target the hips so I do weight exercises, yoga and Pilates. My next DEXA scan is due in Feb 2023,:I will be interested to know if there is any further improvement in bone density. I was concerned about the clotting and stroke risk but I have atrial fibrillation and for this take Apixiban, an anticoagulant. My cardiologist and endocrinologist say this will significantly reduce the risk of a stroke or blood clots.

[Nuthatch in reply to Bev53-SB]

Thank you, that’s interesting and reassuring. Can I ask how you came to be on this rather than a bisphosphonate? Here in the UK they really push the cheapest bisphosphonates but I’m not able to take any form until I can get a broken tooth fixed which will be months on the NHS as it is now 😢

[Bev53-SB in reply to Nuthatch]

I am also in the UK. I was diagnosed with OP 13 yrs ago. I refused bisphosonates from the onset because I have a complicated dental history and also a hiatus hernia. I managed the condition with exercise, dietary changes and supplements and did well. However 4 yrs ago I was a passenger in a car accident and suffered a fractured sternum and two spinal compression fractures. I was told this would compromise my spinal stability and treatment was highly recommended. Again I refused bisphosonates, I had done my research and spoken to NOS nurses after which, I decided that I wanted to try Raloxifene …. I pushed for this medication and it was prescribed by the consultant at the hospital I was attending for yearly reviews and DEXA scans.

[Unluckylors]

Hi,

I have been taking Raloxefine, also on the advice of an ROS nurse, since last October. Prior to which I was on Alendronic acid for 6 months which gave me terrible stomach pain. I have had no side effects whatsoever and have booked a REMs scan for October 27th as I have always questioned my Dexa Scan which gave me a result of -3 in my spine and -1.3 in my dual femur. I was diagnosed with osteoporosis and am reluctantly taking the tablets. I fell of the kitchen worktop during lockdown and as a result have a compression fracture in L1. I have an ongoing disagreement with my GP about this result as there is quite a discordance between the 2 readings and it was a high impact injury. We will see when I spoken to Dr Nick Birch. My advice would be to take the Raloxefine and book a REMs scan. Good luck

[Nuthatch in reply to Unluckylors]

Thank you, it’s good to know you haven’t had side effects. I’m just about to finish teriparatide but won’t take a bisphosphonate at this point because I have a broken tooth and can’t get it fixed on the NHS for months. I’d like a REMs but it means travelling as they’re never available anywhere near here. My DEXA scores were in the severe OP range 2 years ago because I have compression fractures.

What were you doing on the kitchen worktop?!

[Unluckylors in reply to Nuthatch]

cleaning the inside of my kitchen windows which I’ve done countless times but lost my balance!!

[Nuthatch in reply to Unluckylors]

😂😂 I empathise - I do all sorts of things I probably shouldn’t as I have spinal fractures but life has to be lived! Not that I’ll be rushing to clean my windows… but there’s walking the dog and climbing over things (such as a large tree after the awful storms this year) and scrambling down and up deep ditches because the dog has disappeared the other side after deer, squirrels, rats, moles, pigeons etc etc..

It certainly sounds like a high impact injury! Are you still cleaning windows?!

[Unluckylors in reply to Nuthatch]

Absolutely!! 😂

[DazzleP in reply to Unluckylors]

I didn't go on that medication for exactly that reason. I have suffered gastro issues. My Dexa Scan came out at -3.8 on my spine so I can understand everything you are saying. Can I ask what a REM scan is because I am not sure that I have had one of those?

[Nuthatch in reply to DazzleP]

My spine score was similar and has only improved a little but I guess that’s better than nothing! The REMs is a different type of scan only provided by osteoscanuk.com/ in the UK. It’s not available on the NHS and you have to travel to wherever they are holding a clinic but a lot of people on this forum speak very positively about them. Have a look at that link and then search the forum.

I think I’ll try and arrange one for early next year, Edinburgh seems the nearest but it’s always good to visit there anyway.

[DazzleP in reply to Nuthatch]

Thanks very much I will have a look now

[DazzleP]

I have asked for it but it is not actually available yet to prescribe

[Nuthatch in reply to DazzleP]

The nurse at the bone clinic indicated that I could be prescribed it - who told you it wasn’t available? Is it due to where you live maybe?

[DazzleP]

My Rheumatologist. He said although it had been approved it was not yet available to prescribe. That was only a few weeks ago. I am in West Essex area

[Nuthatch in reply to DazzleP]

That’s interesting. I was told that about romosuzomab (sp?) which the ROS nurse thought was available.

[Pumpkin71]

I've been taking Raloxifene for 22 years and haven't had any side effects. I've had a small increase in bone density in my spine. This is more impressive than it sounds because I was prescribed Raloxifene just before menopause. Bone loss occurs at the fastest rate for the first few years after menopause.