Anyone taken Evenity (romosozumab) for Osteoporosis?

I'm so sorry that you're dealing with this but hopefully your endocrinologist has a few ideas. Some people on these threads are taking osteoporosis meds that work off a parathyroid approach and doing well. Its hard to know exactly what to do ourselves beyond the basics of calcium-rich diet, weight-bearing exercise within our capabilities minimizing fall risk. Basically a lot of the FRAXL score might be over-estimating fall risk but we can do a lot to make ourselves safer at home at least. I hope your doctor visit goes well and he has some other approaches to try. [I was going to say maybe he can pull a whitebunny out of his hat but puns are so corny ;-).]

It is unfortunate that so many insurance policies require use of the so-called "front line" drugs like bisphosphonates and Prolia before moving on to bone-growing meds. The bisphosphonates and Prolia slow reporption/turnover so over time, at least for some, the bones become more brittle: no new bone via turnover.

When you start Forteo, Tymlos or Evenity to grow bone after the other front line meds, you might potentially be growing bone on a foundation of lesser quality bone. Furthermore, Evenity also suppresses resorption/turnover while growing bone, though to a lesser degree than the others.

Forteo and Tymlos do not affect resorption/turnover so the bone they grow is quality bone (but growth is "turbocharged" with Evenity.)

I am surprised how many on here are taking Evenity, which is so new, rather than Forteo or Tymlos. Amgen has doctors putting patients on Evenity followed by Prolia, apparently for a long time. Their insert for Evenity suggests follow-up with Prolia!

I think insurance needs to cover bone-growing drugs FIRST. For whatever time needed and allowed. Someone with a -2.9 might even just need 6 months while someone with -4.9 would need two years.

As for follow-up , if my bones improve enough I will use Reclast to "lock in" gains because it stays in the body so there is no sudden drop off as with Prolia. I would not use Evenity to "lock in" gains but would consider it for further bone growth after Tymlos, then followed by Reclast.

My doc says that I can do 1/4 dose of Reclast at first and with monitoring determine if I need more. If monitoring shows it is okay to take a break I will gladly do so (and have good nutrition, calcium, D, K and exercise).

I think the issue is that people are medicated very early, with the idea of prevention. I had osteoporosis for 14 years and if I had not made a stupid movement, would not have fractured. A -2.5 are bones are not suddenly made of dust. It is a spectrum, not a point. I sometimes wonder if things would work better if Forteo or Tymlos were the first drugs used but you would have to be, say -2.8 or even -3.0. The other drugs actually increase risk of fracture if used for many years so starting early with those would seem to be counterproductive.

This is all speculation on my part. There are posters on this forum who have used Prolia and biphosponates and had gains in density and were happy with the treatment.

To me, logically ,it makes sense that Evenity is not the best follow-up to lock in gains because it also does not stay in the body long so there may be a drop off. I am curious if that was the reason explored in the study.

I agree with everything you wrote here and didn't even contemplate if the new bone was possibly being laid over old or bad bone that should, conceptually and ideally, be shed first! As one not (yet?) Taking drugs for osteoporosis, it sure looks as if one needs a long-term plan of which drugs to take first that don't foreclose one's options for better choices later.

Yes I have been on eventie for 3 months. I had fractures on prolia . I’m still in pain .

I have been taking Evenity for 3 months due to severe osteoporosis. The first two months the nurses gave both injections in the same arm. It made my arm very sore and the second month it was so terrible that it frightened me. I could barely get dressed the next morning. I called my doctor and he said to have 1 injection in each arm and then go home and ice the injection sites and take Benadryl. That made all the difference with the 3rd injection , and I was fine the next day. I have no other adverse reactions. Because of the severity of my osteoporosis, I am determined to finish the 12 month regimen. Feeling much better about this treatment now.
Mary Anne

I have been on Evenity for 6 months. After the first injection I had discomfort at the injection site and generally not feeling well. The Nurse Practitioner recommended taking an antihistamine. I now take Zyrtec one hour before the scheduled injections then each day afterwards for about 5 days. I have not had any side effects since I started taking the Zyrtec. I am expecting good results from this treatment and will report the results when I have completed the 12 month course.
Lindsay

I guess I haven't heard of this new medication. At 37 I fractured my T9 raising my arms over my head and from there eveything snowballed. Had my first DEXA scan which showed extreme minus numbers for hips and spine. Continued to fracture bones with normal movement. Pre-menopausal. Started on Fosamax daily(I think. It was so long ago). Worked some but wouldn't sustain. On to Forteo. LOVED the bone growth with this. I gave myself injection daily for 2 years. That is the limit on Forteo. At the same time I was doctoring at Mayo with these bone issues, spots on body, elevated WBC...(diagnosed in 2005 with Systemic Mastocytosis which I gave myself 3 shots a week of Interferon for 3 years) I then went on to Fosamax to sustain the new bone from Forteo. That did well. My doc decided that since I had started so early in my years that I should have a drug 'holiday'. It was almost 4 years when I fell on ice and fractured my pelvis in 5 spots. THE WORSE EVER. 1 week hospital, 3 weeks transitional care. Home to a 4 level home with a walker and crutches. On to Prolia and my endocrinologist says will be my go to for 'ever'. I am now almost 66. I continue to have DEXA scan every 3 years, And Prolia every 6 months. Had 2 minor stress fractures in my ankles last summer. Wore a gel brace on one and that got better and a boot on the other. Stepping off curbs, dip in the yard, ice(live in North Dakota)....frighten me daily.

I was diagnosed with severe osteoporosis at age 55. Rather than take any medication I tried adding supplements to my diet and did a year of Osteostrong. A second Dexa scan after this showed continued decline. I was still hesitant to take any medication until during my physical last year (age 58) it was found that I had lost 3/4 of an inch in height (due presumably to compression fractures). I decided at this point that I had no choice but to start taking medication. My rheumatologist recommended starting with Evenity due to the severity of my osteoporosis and my compression fractures. She indicated that Evenity would help to repair these fractures.

So far, I have received 9 of the 12 doses and luckily have not had any side effects. My height has increased 3/8 of an inch. This is only half of the 3/4 of an inch I lost but hopefully the gains will continue. I plan to get a Dexa scan after the final dose in June and will report the before and after numbers.

I have been told that meds like Evenity or Tymlos help with "healing" but there is no change in the structural changes from the fractures. In other words, I would be curious to hear how and why you gained 3/8 inch.

I have received Evenity for 10 months but now we are living almost 4 hours from home for the next few months and my doctor has tried to refer me to someone locally to complete the 12 month course but not able to find anyone. So I would like to know the difference in effectiveness for 10 months of treatment versus the full 12 months. If necessary I could drive home for the shots. I can't find any information to help me with my decision.