Anyone taking evenity?

[SpaghettiIsGood]

This was recommended for me. Two injections, one right after the other, once a month. The worst side effect is death by stroke or heart attack. I haven't had a fracture since youth. Do I risk death for a fracture I may never get (however my teeth are breaking) .

[LM100]

This is a new drug (Romosozumab) not licenced in England yet. Apparently a game changer as it builds bone as well as preventing loss. I would say you are lucky to be offered it.

[SpaghettiIsGood in reply to LM100]

U.s. approved it on 2019. Maybe it will be in England soon.

[LM100 in reply to SpaghettiIsGood]

They have approved in Scotland and Wales (I think) but not England. Some senior doctors wrote into The Times to complain about it not being approved so there is a need for it. I am not sure what the reasoning is (probably cost) or whether they will eventually approve it.

[SpaghettiIsGood in reply to LM100]

There has been an issue with the drug that some governing bodies can't get past, such as the drug grows a third eye (I forget what the real issue is). Once they figure out how it can be sold with the awful side effect, it gets approved.

[AnnieW55]

I am not taking any meds and don’t have any experience of evenity but as LM100 says it is quite new. However, I have read, from several sources, it is only to be taken for 12 months, so do you have a plan of what to take after that period? Below is taken from medical news today.com

“Will I need to use this drug long term?

Evenity is meant to be taken for 12 months only. After 12 months, the drug becomes less effective at rebuilding bone. (Evenity works to treat osteoporosis by rebuilding bone and slowing bone breakdown.)

If you still need treatment for osteoporosis after stopping Evenity, your doctor can recommend a different treatment for you.”

[LM100 in reply to AnnieW55]

My hope would be that you won't need anything if it is as good as it sound but imagine you'd be on a bisphosphonate afterwards if needed? Best to ask your doctor.

[SpaghettiIsGood in reply to AnnieW55]

No, I don't know what I would take next (but I probably won't take this or any other drug to prevent a fracture). This is a new question I am learning is an important one to ask doctors (will I need to take another drug after this).

I know a very old person who was diagnosed with osteoporosis and her doctor told her she would be in a wheelchair for the rest of her life if she broke a bone. Guess what, she broke a bone , was in a wheelchair, healed up, then went on to fall fifty times (she said), and didn't break one bone. He told her to take a bone drug and she said no way, after reading about the side effects (one of them being death).

[AnnieW55]

I broke my hip at 63 and came out of hospital with several medications including AA which I think was given as a matter of course. I stopped taking it after getting side effects, luckily with my doctor’s approval, and discovering this site and inspire.com and coming to realise we have to research and question everything.

[Met00]

Why are you being offered Evenity, which must be followed by another medication, if you haven't fractured? Do they consider you to be at very high risk of fracture, and, if so, have they explained why?

[SpaghettiIsGood in reply to Met00]

The rheummy said it was because of my dexa scores. She's never seen anything that bad. Well sure, she's only one or two years out of school so she hasn't seen much. I might also add that this person is a physician's assistant in a rheumatology office.

[Met00 in reply to SpaghettiIsGood]

I've just looked back at your previous posts and been reminded that you had a very low t-score, although you only had one result to hand. Do let us know when you get your other t-score(s) as it may be that -5 is in error. It certainly shouldn't be used as a stand-alone figure.

[SpaghettiIsGood in reply to Met00]

Well thank you for that. I'll have to find the report. Would love if it were an error.

[SpaghettiIsGood]

My rheumatologist told me that it didn't matter if I had teeth issues (in reference to getting evenity injections). But I read that it does matter. More of a reason to switch rheumatologists.