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.
I totally agree. All my regular doctors still are against HRT, because of one flawed study. We could have been healthier and happier.
There is a 1 in 8 chance of having breast cancer and 80% of those breast cancers, I have read, are hormonal. The HRT study was skewed toward older women and we older women are well-represented in that 1 in 8. I would be cautious about HRT over a certain age. I know that study is controversial but as a cancer patient with a hormonal cancer, I also want to pass along some caution!
@daisy17 I had almost unbelievable gains in my spine (30%) and less than average gains in my hips (less than 3%). I had no side effects worth even mentioning. I went from a -3.7 to a -1.8 L2-L4 score. On my worst T-Score I went from -4.1 to -2.2.
I was jumping for joy but afraid to trust the results. I had a certified Densitometrist on Inspire look at my DXA's and he thought they were ok. I did find one small study where 1 individual got a 20% gain and one got a 30% gain. So it's not completely unheard of. I decided to trust it. And I'm having another DXA at the complete end of Evenity which is at the end of the month. The 30% DXA was at 10 months of Evenity.
Wow! I am so hoping for the same. I’m still not sure what to go on to keep those gains. I was on Reclast for the last two years and just started Evenity, but from the discussions I’m seeing, my gains might not be that much because of being on Reclast first??? I’m also not sure what to do after this year of Evenity is up. I definitely don’t want Prolia.
That's great! Thanks
I had a nearly 17% increase in bone density with the highest gain in my spine. I have read others say greatest gains are spine. I had no side-effects in my year of Evenity.
Your mom. My mom too. Why I requested testing originally
@patwerthman Since I wrote the post in September, 2024, I have completed all 12 of the prescribed Evenity injections. I had a DEXA bone density scan in mid-November that showed significant gains in my hip (6% gain) and gains in my lower spine. I'm out of the osteoporosis range and back in the osteopenia range. I met with the endocrinologist who then recommended a Reclast infusion. I had the Reclast infusion in early December with no acute symptoms or side effects. The plan is to have another DEXA scan in November, 2025.
Great. I read many commenters about reactions to Evenity. But I’ve only been on alendondrate with no real movement in 3 years. -3.7. 3.5. And this November 3.7 Doctor says all is fine. 🫣🤔
@patwerthman, where is the -3.7 ? Alendronate does offer long term fracture protection, but -3.7 doesn't seem fine.
Forteo or Tymlos are worth consideration most especially if the low numbers are in the spine.
I'm starting a third year of Forteo.
The needles are so tiny (3/16') that you laugh when you see how easy it is to inject yourself everyday.