Evenity treatment for osteoporosis

[youvegotmail]

I'm on steroids for the rest of my life for another illness, which have been one of the causes of the osteoporosis. Because my scan result is very severe for my spine my consultant wants me to take Evenity, Romosozumab injections for a year then go onto a bisphosphonate for 5 years. Evenity was only passed by N.I.C.E in the Uk in may this year. It was passed in scotland and wales in 2020, but because covid came the Uk put it on hold until this year. Among the side effects is 1 in 125 had heart attacks and 1 in 166 had a stroke and 1 in 90 had a major adverse cardiac event.

Has anyone in scotland or wales taken this and how were they. Did it work and make your bones stronger. Also I'm worried about the side effects as seem high odds.

[PMRpro Ambassador]

Have you contacted the ROS helpline?

theros.org.uk/

Their expert nurses will talk you through it. Since it is so new and not been in use much in the UK, experience will be limited but it has been approved in the USA since 2019 so maybe someone has personal experience.

[youvegotmail in reply to PMRpro]

Hi thanks for replying. I did phone ROS helpline they recommended I went on health unlocked to speak to people in Scotland etc as it is new to UK . They didn't have any info and also told me to look at the patient leaflet.

[PMRpro Ambassador in reply to youvegotmail]

Oh excellent!!!!! You would expect that when something has been approved here they might have sought info from elsewhere wouldn't you?

If I get a chance tomorrow I'll ask if it is being used here in Europe - we don't seem to have come to quite such a full stop on such things as the UK but you never know!

[youvegotmail in reply to PMRpro]

thanks for helping, such a big decision heart attack or strong bones..

[PMRpro Ambassador in reply to youvegotmail]

I haven't read much about it to know what the risk really is but they wouldn't use if if the risks outweighed the benefits. And I get the impression it is more likely if you have a history of heart disease - do you?

[youvegotmail in reply to PMRpro]

I don't but my father in his 80's had a mini stroke last year and both his parents died in their 80's from strokes. Even though they don't ask about parents it does make you wonder. I agree hopefully the benefits outweigh risks, its just that its only been in Uk for two years, a month in england and such high sats. I just need to make a choice and am not very good at that.

[PMRpro Ambassador in reply to youvegotmail]

What they worry about is early deaths - before 60-65 I think.

Apparently Italy is still working their way through the paperwork!! Not in use here - I did ask the rheumy I was doing an interview with for a study. He also said part of the delay was supply problems - Covid rather messed up manufacturing.

I presume your spinal dexa scores or pretty poor? It seems to work very quickly to boost the density and then they use ordinary bisphosphonates to maintain the gains

[youvegotmail in reply to PMRpro]

I'm 59 so don't want to be one of those early deaths. My dexa scan T score is 3.8 for spine, 2,2 femoral and 2.1 hip.. It looks a good drug to increase bone density and yes I would be put on bisphosphonates after. Thank you asking about it for me, much appreciated.

[PMRpro Ambassador in reply to youvegotmail]

I really meant parents for family history - sorry, not you!

Mmmm - -3.8 is awfully low isn't it. My husband fell and developed a spinal fracture and when they did his first ever dexa it was -3.3 in his spine It was very painful and really left him very frail and disabled, the beginning of the end as it turned out - to be avoided at all costs.

All the best making your decision, I assume they favour it more for you than Prolia - that also builds bone quite quickly but not as quickly. they work in different ways - Evenity actively builds bone as well as stopping bone breakdown

medicalnewstoday.com/articl....

[youvegotmail in reply to PMRpro]

Thank you for all your help, the link to the article on Evenity v's Prolia was interesting reading. It gave me some more facts, that I need to help me decide. Sorry to hear bout your husband, yes something I want to avoid.

[Sophiestree]

Can he not give you a different option. I can see why you might be concerned with those stats.I have pretty hideous osteoporosis and have been having a Zalendronic Infusion yearly (3 years is the limit I think )

I was concerned as AA caused me a lot of problems when I tried them years back and I stopped. Then my husband died and I got lost in the system and it wasn't really on my mind hence I am in this place I guess and not knowing about the great knowledge on this site all those years ago. I have had no issues (so far) with Zalendronic, I am having the last one in Dec this year.

[youvegotmail in reply to Sophiestree]

Hi, sorry to hear you got lost in the system after the sadness of loosing your husband, I had Zalendronic on my research list and it mentions tooth loss as aside effect, I take it your teeth are ok. Consultant mentioned going on to Risedronate after the Evenity. I take it you don't know what you'll be on next year.

[tinwoman]

HI I completed Evenity treatment in March this year. I have been on steroids since 2014 and had a previous diagnosis of osteoporosis, so my consultant was concerned that the steroid treatment would adversely affect the condition of my bones. Previous treatments for osteoporosis has not worked as evidenced by Dexa scans. Having been on Evenity for one year the Dexa scan showed remarkable improvement in my bone density, its the first medication that has improved my bone strength. My brain fog is terrible at the minute so I cannot remember the exact percentage improvement, but the consultant said she checked the results twice as they were so good. I am really pleased with this as you can imagine, so maybe something positive for you to consider as well as the risk factors, which I too felt were rather daunting.Hope this helps

[youvegotmail in reply to tinwoman]

Hi, that was very helpful. It has made me more confident about trying it as your medical history is similar to mine. I presume you had no side effects and found doing the injections easy and you got used to the pain from them. Can I ask you a very personal question, though I don't need the exact figure, but are you around my age, 59. Its to do with the heart attack issue , obviously age being one of the many factors. Thanks

[tinwoman in reply to youvegotmail]

Glad you found my input helpful. I am older than you at 68 when I started the treatment. I did have some side effects as I have gastro intestinal issues with Sjogren's so the treatment made me nauseous and I had a slight headache after the injection. I found giving myself the injection easy and had no problems there. Please don't hesitate if I can be of any further help in making your decision.

[WellThatHurt]

Hi, can I ask how you are getting on with the Evenity Romosozumab? I've just prescribed it to start ASAP and I'm keen to find out what it is like. I'm 64 and on steroids and my dexa scan shows very severe osteoporosis.

[youvegotmail in reply to WellThatHurt]

Hi sorry I didn't see your post before today. I started in December and did the injections in my legs. I don't recommend this as it really hurt, legs were so sore I could hardly walk. I have done my last three in the stomach they sting a little and you have to wear baggy clothes for the day after. I just have a little redness and sometimes a small bruise depending if it bleeds. With the training they tell you to count, I find with the stinging I can't so I listen out for the clicks one at the beginning and one at the end and watch the liquid go down. I find lying down and pinching my belly fat upwards is a good amount to inject into. I'm a bit apprehensive before but I'm fine after and can go about as normal. I hope this puts you at ease we need to do all we can to get our bones stronger.

[WellThatHurt in reply to youvegotmail]

Thank you for your reply. I did my first injections 2 weeks ago in my legs as I’d had demonstrated. I was so nervous I automatically jumped when the first one ‘fired’ and pulled it out of my leg. I did immediately plunge it back in again though so I got most of the dose. The second leg was fine, but painful to do. I wasn’t told anything about counting, just watch the yellow go down and listen for a click.

I was expecting all sorts of side affects and soreness but actually had nothing afterwards at all! I was amazed, and probably very lucky.

I think I’ll do the second dose in my legs as I don’t think I could face trying in my stomach. I’ll see if there’s any reaction to that one and go from there.

[Songbird6]

Hi, today I have been offered Romosozumab/Evenity by my Osteoporosis Clinician so your post is very interesting to me too! I have decided to go ahead and should get my first pack after Easter now. I was made aware of the risks etc, and I informed her of my family history of Heart Attacks, Strokes, parents were in their 80's, my sister was 58 when she died in 2004 of a Heart Attack. I am also interested in hearing about other's who are on the medication. I am 62 and have severe Osteoporosis because of Steroid use prescribed without additional bone medication!

[PMRpro Ambassador in reply to Songbird6]

If you want plenty to see your question you need to repost as a new thread. People who have already read this post are unlikely to look again unless they followed it and very few do, Only DorsetLady and I follow all threads and neither of us are familiar with Evenity,

[DorsetLady PMRGCAuk volunteer in reply to Songbird6]

As PMRpro says -repost please. No experience of Romosozumab/Evenity

[Songbird6 in reply to DorsetLady]

Okay, thank you

[youvegotmail in reply to Songbird6]

Hi songbird, sorry to hear you lost your sister at such a young age. It was a big decision for you to make to go on Evenity. I started it in December and I did my injections in my legs. I do not recommend that as the reaction was awful. My legs were very sore and I could hardly walk. My last three I have done in my stomach. I had a red sore skin for the 2nd one but the 3rd and 4th were ok just a little bruise nothing else. I lie on the bed pinch up as much skin as I can. When you do the injection you are supposed to count but I find with the stinging from the injection I can't focus on counting. What I do is watch the liquid go down and listen for the two clicks one at the beginning and one at the end and wait a bit after it's finished then take the injection off. You will get training. I find I'm apprehensive just before I do the injections but know it's for my good. I'm ok afterwards and get on with life as normal. One other thing is wear baggy trousers or a skirt because the skin is a little tender after. Good luck and have a good easter.

[Songbird6 in reply to youvegotmail]

Thank you so much for your reply, I feel a bit better for knowing others are taking this leap. Thanks for the heads up on injection site and effects, I have just returned to work so could be a bit of a problem if I react like you, we will see!You too have a great Easter x

[youvegotmail in reply to Songbird6]

just to say you may want to book the day off work after your 1st one just incase you react even if slight. I didn't and had to phone in sick. With my 2nd one I swopped shifts so I could have the day off after. Like I said the last two have been ok. Let me know how you get on.

[Songbird6 in reply to youvegotmail]

Thanks, that's a good plan, I do have Monday's off so if I take the injection on a Sunday that'll give me Monday to recover, hopefully! 🤷🤞I'm not expecting the meds to arrive till after Easter now, but I'll certainly keep you posted. Thanks so much for your help,

Take care,

Ellen😊