Regarding Evenity and Forsteo

[Angelicspirit]

Please may I ask if anyone in the UK has continued to be prescribed Forsteo beyond the ‘normal’ 2 years?

And…. How many of you have been prescribed Evenity (uk)

Thank you for your patience.

Warmest wishes to you all, Margaret. X

[rwlmartin1]

Yep. I was on Evenity for the year and it did absolutely nothing! Did DEXA before and after and no change! (Marlene)

[Angelicspirit in reply to rwlmartin1]

Thank you for answering Marlene. I’m trying to get as much information as I can because these 2 drugs have been mentioned at a recent consultation.

[Posy-White]

Hello Angelicspirit

I had Forsteo from June 2018 to July 2020 understood that the 'testing and recogmended time' at that period was for one course of no more than 2 years. Since 2018 other drugs Terrosa & Movymia became available in the UK my understanding was they are 'the same' as Forsteo, but are cheaper.

I had 8 rebound fractures and spinal damage, hence the Forsteo course. I have not (touch wood!!) had any further fractures since.

Good Wishes Posy White

P.S Love your chosen name!

[Angelicspirit in reply to Posy-White]

Hi Posy and thank you for replying to me. It’s wonderful to hear you’ve had no further fractures since finishing Forsteo. May I ask you 2 questions please? Firstly, did you have follow on treatment after Forsteo? Secondly, you mention rebound fractures, were these by chance after a course of Denosumab ( Prolia )?

I finished Forsteo 367 days ago and ( reported earlier on Health unlocked) due to a massive blunder by my then consultant and then me having a severe adverse reaction to ZA infusion , I’ve been off treatment all that time. I was put on Forsteo after at least 14 spontaneous fractures and made good gains that have now been lost.

Thank you again for sharing your valuable time and experience.

Margaret. X

[88km]

hello there

I was also on Teriparatide for 2 years ( would have liked to continue longer but not allowed in the Uk ) I cannot take AA because of oesophagus problems & am still contemplating Zalandronic infusion . The ROS advised me that the loss of bone density is not instant when stopping Teraparatide & said it would be ok to wait a couple of months or so x

[Posy-White]

Hello again Angelicspirit,

I did have a follow up medication after the Forsteo, it was during lockdown when I had finished the course and I had a holding year of an Infusion of Zoledronic acid. I was too worried at that stage to go back on to Denosumab ( Prolia ). Unfortunantly I had some eye issues with the Zoledronic acid infusion so I have since restarted Denosumab ( Prolia ).

Long story, but yes rebound fractures were because Prolia was stopped (by the hospital). I did quite well on Prolia first taken in 2012 -2017, I had a few minor side effects, but nothing to be worried about. Main thing was great improvement after 5 years of Prolia scans now showed scores in the mid osteopenia range, significant improvement. But unfortunately for me the Prolia was stopped because “I didn’t need medication anymore” and the small local hospital didn't know / hadn't realised you don't just stop Prolia - so that's how in 2017 ended up with 8 spinal rebound fractures. Because of the problems I lost confident in the local hospital so changed hospitals. The consultant I now see explained that I shouldn't be too concerned that after two years on teriparatide I only had nominal improvement to bone density, as the teriparatide doesn’t just stop working (unlike Prolia) but I can understand your concern to be so long without the support of medication. Have you tried talking with one of the Specialist Nurses from the ROS helpline for ideas and support?

Take Care I do hope you can find some suitable help soon.

Posy White x

[Mavary]

yes I’ve been prescribed Forsteo for life.

[Angelicspirit in reply to Mavary]

Wow Mavery! That’s an incredible achievement. Well done, that will give Margaret a lot of hope.

[ROSModerator Partner]

Hi,

Thank you for taking the time to come on and share 😊 It’s really positive to see the support on here. We just wanted to drop by to let everyone know that we have lots of information on our website that might be helpful, including information about medications and understanding drug treatments: theros.org.uk/information-a...

Wishing you all the very best,

ROS Moderator