Anyone taken Evenity (romosozumab) for Osteoporosis?

I was really tired when I sent that last message. So sorry about the typos. I meant to say I have been really afraid to take these drugs as well.
Sorry about that,
Candy

Hello! I am still so confused on what to do and so appreciative of all your comments. It’s comforting to know I’m not alone in this struggle.
I’ve been on Roisedronate for two years after a year of Forteo. I now need to do something else because I have developed severe heart/GERD issues & found I have esophagitis.
My endocrinologist recommended Reclast or Prolia (also mentioned Evenity). I finally decided on Reclast but a few days before the infusion appointment, I canceled.
I read too much! And I’ve had friends who have had side effects from all. I have been off meds since Oct. My scores are not good (-3.7) & I have severe scoliosis. I know time is of the essence but I have so much anxiety about every one of these drugs!!!
Diane

Very encouraged to read about such solid results from a year of Evenity, and that everyone is living through it, in any case! Like many who've posted here, I was very nervous about starting this drug and dove into the medical literature to get a real sense of the risk. Unfortunately, the research to date has not established a biological mechanism to explain a link between the drug and any elevated risk of heart attack or stroke. My endocrinologist acknowledged this and the fact the longitudinal data about potential risks and long-term effects of this drug just don't exist yet. Still, he said it's the best option for me to build bone density. (I was on Prolia for five years, had a modest gain after two and nada after that; Fosamax is out because of GI problems; and Tymlos hasn't come up, although the cancer risk, if slight, turned me off.) But he did order a cardiac calcium scan and additional blood work to assess my baseline risk before my first injections in January - the good results of those gave me the confidence to start Evenity. Something for those still on the fence to consider requesting...

@diwint why can't you do another year, at least, of FOrteo (or Tymlos)? With scores still that low you could also do Evenity.

@hfreifeld there hasn't been a single case of cancer with Forteo, I have read, and the black box warning was removed. Tymlos also works with the parathyroid but is newer: I have read that it is expected the black box warning will be removed for that too. I don't think there is any cancer risk, and I have already had breast cancer, so my worries were high about metastasis to the bone growing with these meds. I am almost done Tymlos now.

Thank you for your response. My doctors had wanted to hold off on the other year of Forteo until right before my potential spine surgery. However, it’s now been determined I am not a candidate due to the condition of my bones etc. I have thought about asking if I could go ahead with Forteo. Last time it was quite a struggle getting it approved by insurance.
Good luck to you! Thank you again for your input.

Hi Penny,

See if you can find Ripple milk…it is made out of peas and has even more calcium than Almond milk. Just a suggestion.

I did the same thing. I just had my CT Angiogram last week and that makes me feel a little better about evenity. I am 64 and still concerned but my doc things it’s the way to go.

Hi Diane,
Thank you for sharing your story. I have severe scoliosis as well and my score is quite a bit worse than yours. Did you see any improvements with forteo?
Trying to decide between forteo or evenity.

After one year my score improved slightly at my hip & wrist. My spine has such a bad S curve they struggle to get a reading. But it appeared to stay the same. As my doctor said, at least it didn’t get worse.
Good luck with your decision. Always hoping & praying for a better solution!

Hello
I have completed 6 months of Evenity. Yes, I have had side effects beginning after my second month. Fatigue, some insomnia, joint aches, decrease appetite. I have continued exercising and walking 3+ miles a day. The medication decision is hard. We are all caught between a rock (the osteoporosis will not improve doing nothing) and hard place (starting medication). All we can do is make the best decision possible at the moment. I pray you make a decision soon.