What should I know before starting Evenity?
Sept 4th, 2024
EVENITY
Like many of you, I have started from shock, to fearfulness to being
apprehensive what medication to take for severe osteo.
My numbers are L -5.2 hips -3.6 and -4.0
I hoped to be able to improve the numbers with diet and exercise.
Eventually I realized that it might be possible with osteopenia
but probably not with severe osteoporosis. Dr Beck
Onero program is not available in Vancouver, yet.
I am trying to learn hip hinge and squats
eventually I will find a a physical therapist/kinesiologist
with osteoporosis experience.
I do the stairs as often as I can, increasing how many times:
until hopefully add ankle weights.
My threadmill speed is 2.2mph..the goal is to increase every few weeks:
method: increase, count 24 seconds - go back to starting baseline – several times:
the goal is 2.5mph which is maintenance: and the larger goal is 3.1mph
which is osteogenic.
Diet: aside from the calcium and and Vit D: am looking into natural
sources of Vit K (Natto is not something I could consume regularly).
and have 5-6 prunes daily.
So…have finally made the decision to go with Evenity, if approved.
Have not used anything in the past: anabolic or anti resorptive.
Thank you for ladies from Canada for mentioning CTX. It is available
in Vancouver (sorry I didn’t mark down names) P1NP and TBS is not available.
Neither is REMS. I got a CTX – which we pay out of pocket here, so is
Vit D out of pocket unless it’s requested by a specialist. And TBS is
not available either. My CTX was in the 500.
Would be glad to hear comments, or shared stories.
Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.
@awfultruth I am with you. My doctor has already bent his protocols for me twice! I am hoping to have a good conversation.
I think we forget that after menopause, it is natural to continue to lose bone density. So I separate "locking in gains" from natural loss as two separate issues.
I don't want to lose what I gained from meds in a rebound type of situation.
But I might be okay with a slower natural loss if I can go back on an anabolic and do the whole rigamarole again.
@bwaykm I hope you can keep an appointment for Evenity.
Many drugs have stroke and heart risks listed as possible side effects- even my NSAID.
If you look at the FRAME and ARCH studies on cardiovascular risk with Evenity, there is no difference between Evenity and placebo. There is a small but apparently statistically significant difference with alendronate and I have read that might be because alendronate is somewhat protective.
I have afib and had no heart/ cardiovascular issues with Evenity!
@06111945cc if I ever got to -1.5 or -1.0 I would not take meds. As I wrote above there is natural bone loss after menopause. But with scores like that I personally would try natural approaches.
I will only have those scores in my dreams!
Yes, will let you know. Will be a while alas as I'm scheduled for my scan only 5 1/2 weeks after my last Evenity treatment which was a week ago. And I don't see the doctor again for 7 weeks after the last treatment. (In fact I've been meaning to write and ask people how long after their l2th Evenity shots did they got their blood tests / new scans / doctor appointment...)
@awfultruth: Had my last Evenity treatment on Oct 4th and wondered what recommendations you were given for spacing between last shots and starting a new treatment (Alendronate / Fosamax for you?) as I have a DEXA scan is scheduled for 5 1/2 weeks after my last shot and doctor appointment 7 weeks later and seems a lot to me. And I don't find much online on the subject and it's not a doctor's office that's easy to hear back from when I have questions!
I would love to hear more from people who have locked in gains post Evenity with HRT and/or resistance training versus Prolia or Reclast. Please speak up if you did. I am currently scheduled to start Evenity in Nov. I figure I have a year to figure it out. At this point I’m opposed to any bisphosphonate if there is an alternative!!
@osteoresearch I have done two low dose Reclast infusions and may stop. I did Tymlos for two years and Evenity for months. If you do the whole year, the latter part is anti-resorptive. I don't think enough research has been done since Evenity is so new (2019). I have wondered if the anti-resorptive months help lock in the anabolic earlier months.
I sure cannot do resistance training or weight lifting- too far gone w/fractures though DEXA is borderline now for spine. I can't do HRT due to breast cancer. If you have those options, let us know what happens!
@spiderplant Like you, I have seen little online about how long after the last Evenity shot you should wait to start a follow up drug. My doc told me to start 30 days after I finish Evenity but offered no reason why or what would happen if you waited 2 or 3 months. I haven't been searching for info on that but if you find any please post it.
I've decided on Risedronate. It was my wish based on Dr Michael McClungs logic on the subject as stated in an open mic discussion during the last Santa Fe Bone Conference. He recommended it if you want to do another round of Evenity with a year or so period in between which is what i want to do.
@awfultruth glad you mentioned a doctor. I am going to look him up.
My doctor said 60 days was the limit for waiting between Evenity and my low dose Reclast. He said Evenity "takes awhile to mineralize" so didn't want me to do it right away.
@spiderplant I did a quick check on the Evenity facebook group and everyone says 30 days because that's what their doctor told them. One person had a link to an Amgen site where they say their studies of going from Evenity to Prolia were done with Prolia starting 30 days after the last Evenity dose. No one mentioned a study on the issue. I stopped reading in that group when I found a comment by myself on the topic from 7 weeks ago. I had completely forgotten it. Pretty funny. In that comment responding to someone who was asking about waiting 3 months, I said ""In contrast, BMD in the total hip decreased by 5.4%, returning to the pretreatment level, and lumbar spine BMD decreased by 9.3% but remained above baseline in participants who received placebo for 12 months after stopping romosozumab 210 mg QM." That is from: https://academic.oup.com/jbmr/article/33/8/1397/7605217...
So that source is saying you lose most of your gains by 1 year. Your question is how much of that happens in 90 days?"
The upshot is you lose most of your gains in a year but what happens in those first weeks? Is there actually any direct evidence that the time after the last Evenity shot should be 4 weeks or two months or anything else? Hopefully not too much is lost right away!
Here's a chart showing declines of bone density after stopping different meds with no follow up meds. It appears to be based on results after a year as all the losses are in a straight line. So it is not of much use in our question here.