Evenity Treatment for Osteoporosis

[Songbird6]

Hi, thank you to the moderators, DorsetLady and PMRpro for their advice about reposting.

I have been given the opportunity to use Evenity (romosozumab) Injection, which has been offered to me as I have severe Osteoporosis due to being on Steroids for PMR. I will be receiving my first set of medication after Easter. I have had PMR since early 2021.

I have already had some good advice from a fellow member on another post who is on the treatment, but I'd be interested in anyone else who is taking it too.

Wishing everyone a Happy Easter 🐥💐🐰

[SheffieldJane]

Happy Easter Songbird6, good luck with your new drug. I have no relevant experience to share.

[Songbird6 in reply to SheffieldJane]

Thank you 😊

[Cally55]

I have been taking this for 3 months now. The only noticeable effect is sore legs at the injection sites for a day or two. I too have severe osteoporosis after years of high dose steroids fot GCA PMR. So far no new fractures but it is early days yet.My only doubts are more to do with the state of the NHS. This is an expensive medication, how much is commercially confidendial, and yet after a brief introduction by a rheumy nurse with a dummy syringe I have been left to get on with it on my own. I went to get my first 3 months supply from the hospital pharmacy only to discover that it has to be kept at 4 degrees C, it was a warm day and we live 50 minute drive from the hospital. So we went and got some frozen peas from the nearest supermarket.

So, take a cool bag with an ice pack. And the injections do hurt. After 7 vertebral fractures I am happy to put up with it.

[Songbird6 in reply to Cally55]

Hi, thanks for the info. Sorry you've been left to cope on your own! 😔 I saw my a Osteoporosis CNC, she was really nice and had plenty of time for me, she also demonstrated the injection, then I had a go. I was told my packs will be delivered to my address and I should keep them in the fridge, till I use them. I was told the injection site could be sore. Although I have reported to them that my family history is high risk for Heart Attacks and Strokes, my Sister died at age 58 of a heart attack, I am still a contender for the treatment 🤷 because I haven't experienced any!I am going ahead after 6 plus fractures and a hip fracture but I am concerned but not a lot of choice really. 🤞

[Cally55 in reply to Songbird6]

Me too, rheumy consultant did some relative risk, 10 % heart problems, 30% fracture. Still every time I get an irregular heat beat I squirm.

[Trace_Jay2 in reply to Songbird6]

I was this drug until last month. I stopped after five do to increased BP and heart rate, I ended up being very sob and right ventricle enlargement. I also take steroids daily which increase my risk . my injections were administered each in my endorsement office. Please be careful on this drug, as I had no prior heart problems.

[Songbird6 in reply to Trace_Jay2]

Thanks for your reply, sorry it didn't work out well for you.My first lot of injections are being delivered tomorrow but I am not taking it until the weekend, when I'm not working. I have high blood pressure and currently monitoring at home so those results have not been seen by my GP yet, I think I might delay until that is looked at!

Have they offered you an alternative to Romosozumab/Evenity?

[Trace_Jay2 in reply to Songbird6]

I have decided not to take any osteonecrosis drugs at this time. I'm only 57 and I must look at quality vs q.uanity. I will weigh options in the future, but for right now its about regaining my health.Good luck to you. I'm surprised they're letting you inject yourself.

[Songbird6 in reply to Trace_Jay2]

I've not been offered Ostecroneosis drugs. 🤷 Will be getting a call today from a nurse about starting the injections.

[PMRpro Ambassador in reply to Songbird6]

They are not osteonecrosis drugs - they are osteoporosis drugs. In VERY rare situations they MAY cause osteonecrosis,

[Songbird6 in reply to PMRpro]

Okay, thank you for the clarification!

[SheffieldJane in reply to Cally55]

Frozen peas, genius! I love creative solutions.

[PMRpro Ambassador in reply to Cally55]

My hospital pharmacy supplies the cool pack if you haven't got one and won't hand out refrigerated meds until she is happy - even when it is minus whatever here!

[Cally55 in reply to PMRpro]

I feel desperately sorry for NHS staff who are not able to do their job properly, through no fault of their own, it must be very dispiriting. At the GP pharmacy recently diktat from on high about handing out controlled drugs meant that every time someone collected my morphine the rules were different on one occasion the collector had to produce photo id! That didn't go down too well, as we live 4.5 miles away. Its bad enough getting someone to fetch the stuff without asking tyem to do it twice!

[PMRpro Ambassador in reply to Cally55]

Thst brings up the same criticism as for voting - not everyone has photo ID in the UK,

[Songbird6 in reply to Cally55]

Hi Cally55,When you do your injections do you inject in each leg or do you inject twice in one leg? And have you ever injected into your abdomen area please? Hope the questions make sense 🤷 🙂

[Cally55 in reply to Songbird6]

Once in each leg. After years of pred, GCA and PMR I don't have much fat on my legs but a pinch can find some. There is plenty round the middle though! However it just seems too sensitive an area and if it brings up a lump like the leg ones its going to be a bit incomfortable with waistbands. The nurse at the GP suggested midriff but I am not convinced. The other possibility is upper arm but that might need someone else to help. I prefer to know when it is coming. I have had 3 doses now, I think the year will pass quite quickly. After that I hope it will be a zoledronate infusion once a year, the weekly risidronate was very tedious.

[Songbird6 in reply to Cally55]

Thanks for that. Yes I haven't much fat on legs but plenty around my midriff and the muscles in that area are sore because of my posture from kyphosis in my back and the fractures so I think the legs are the injection site for me. They talked about the infusion after the year of Evenity. I totally agree about Risedronate, such a faff to take! Still not sure when the meds will arrive yet 🤷 Have a good weekend 🙂