Anyone taken Evenity (romosozumab) for Osteoporosis?

My doc recommends Reclast after bone-growing drugs like Evenity, Forteo or Tymlos. Reclast stays in the system longer than Prolia so there is not the sudden drop off in bone density when stopped. He mentioned doing 1/4 dose and monitoring, so Reclast could be given less frequently and only according to blood tests and/or DEXA.

Hi @maryanneelizabeth, first, thanks for your genuine concern, empathy and encouragement! I agree and truly appreciate the warmth, sharing of information and caring from this group. It's a lifesaver for me at this crossroads with meds and time.

If it helps anyone, this is how my treatment plan came to be. PCP did a baseline DEXA in 2007, which revealed I was in the osteopenia category. By 2009 my BMD showed a loss of 7.3% (spine) and 12.9% loss (L hip) — now full blown osteoporosis.

In 2010 I was given Reclast, my first osteoporosis treatment I had a horrible reaction to the drug and vowed never again. In 2011 I began Prolia and continued to present day with little to no side effects. Evenity is a newer drug (same mfg as Prolia—Amgen) after being denied it was finally FDA approved 4/9/19 and continues to carry a black box warning.

My recommended treatment now: Reclast, then Evenity. The thought of either is terrifying—I still have a 'never again’ feeling towards Reclast. Trying to take deep breaths.

Good evening........thanks for your comment. Let's see if I can do a better job of explaining.
1. I began with a bisphosphonate, Boniva, and had terrible side effects, especially in my jaw. Sometimes it was so bad I would have happily endured having all my teeth pulled. So I had to move to something less dangerous for me. That was a choice between Forteo and Tymlos. I chose Tymlos and stayed for two years during which I was able to reduce the osteoporosis to the osteopenia realm. What came next was not a difficult decision.....I had to choose Prolia as it was the only option that was not a bisphosphonate.. I am approaching one year on Prolia and having the same results.... jaw pain. My clinician and I are researching other options........and will make a shared decision in a few weeks.

This is a very difficult situation and I need all the help I can get. What about Evista? Do you know anything about that option? Neither do I but I am determined to find out. My other option is to take a chance on Evenity for a year or so. Although it isn't known to maintain the level of bone development features, it will still prevent reabsorption.

May you be free, safe and protected from inner and outer harm.
Chris

@giannam why Reclast first and then Evenity? Doesn't it make more sense to do Evenity first and then Reclast? I have read that doing a biphosphonate after a bone growing drug rather than before, is preferable. Bone quality is better with the bone-growing drugs and is a better foundation for maintaining with anti-resporptives. I am only another osteoporosis patient and not a doc but have read a study on this and it makes sense intuitively. Or maybe they want to see if Reclast does the job and then you wouldn't need the Evenity? Or insurance is requiring this order of things?

I am 64. I have a -4,7 Dexa and a long story of fractures.
I had 2 months of Evenity. So far no side effects maybe some tiredness.
My concern is about metabolism: Evenity is an antibody of sclerostine. As sclerostin regulates adipocytes and energy homeostasis, has Evenity an effect on metabolism?
I have been told not to increase my weight in order to preserve my skeleton. However all my life I struggled against excess weight despite being sporty and despite a healthy diet. Today because of fractures I have reduced my physical activity and I can’t stop gaining weight.
Does anyone has experienced same issues? Could Evenity make a change?

@windyshores I started to answer and now it's gone! Agreed—it doesn't make sense but neither do my other 2 consults in moving forward. If I explained the last couple of days between other doctors, insurance, drug companies, scheduling PT 3 x a week and the constant research, your head would also be spinning too! Reclast and Evinity aren't covered by my insurance, period—they sent an email with other drug options that 'might be covered but have quantity limits' or of no use to where I am in treatment. Esophagitis—oral drugs which have side effects of the esophagus—I can't swallow and cause further harm. I find it interesting that Amgen (Prolia/Evenity) left 2 voicemails asking for my permission to tell my doc that I have 8 broken ribs. What?? Of course she knows and why are you calling me?! I'm going day by day to keep the insanity in check. Saw a physiologist today—have a PT evaluation set for Thursday. Tomorrow, appt with my Endo to tease apart this mess and come up with a plan. At this point I'm praying for Tymlos (fear of injecting myself aside). I just found your Radius Assist suggestion, more prayers. I'll let you know what tomorrow brings! As always thank you for being a sound voice of reason.

The broken ribs are important because insurance might cover you for all drugs if you have fractures (at least mine does). You can also take an oral biphosphonate for a couple of weeks and tell your doc that they are aggravating your esophagus/GERD and that also helps with insurance.

I worked with Together with Tymlos. They assign a rep to you who will guide your application for Radius Assist. It is confusing because the Radius Assist application is on the Radius website. Hope this all works out!

Hello @artscaping I've not forgotten you! Promise I'll write tomorrow or in the middle of the night as I'mm not sleeping! Dig a bit on Evista...somewhere it came up for me but as I recall it mimic's Estrogen and is used more as a preventative drug in postmenopausal women. Also reduces the risk of of invasive breast cancer but is not a cancer medication. That's the basis of what I remember. I'm so sad to hear you had those jaw side effects in 2 drugs. I think we're both in a pinch here, I have an Endo appt tomorrow which I hope will get things moving in a sane, safe direction. Until then, have a good night.

I have gained weight since I started Evenity 3 months ago.

Thank you for replying. Could I ask you if you ever had weight issues before?