1. < Osteoporosis & Bone Health

What should I know before starting Evenity?

Posted by bevlevvancouverbc @bevlevvancouverbc, Sep 4 6:24pm

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.

maieva | @maieva | Oct 18 12:55pm
In reply to @awfultruth "@maieva As @windyshores has already stated using OJ and almond milk to get calcium is not..." + (show)
@awfultruth

@maieva As @windyshores has already stated using OJ and almond milk to get calcium is not really getting food based calcium. It's just food with calcium added to it. Like sprinkling a powdered calcium supplement on your food. Also, almonds are quite high in oxalates which bind with calcium and other minerals and therefore interfere with your bodies utilization of those minerals. There seems to be disagreement as to how much oxalates interfere in that way but I think a conservative view might me to keep oxalates low. As in daily use of almond milk might not be a good way to get calcium.

Personally I think people are over reacting to possible dangers of supplements to the point that many people with osteoporosis may not be getting enough calcium. Sure it's probably best to get any nutrient from food but if you do not get 1000-1200mg of calcium in your diet, my thought is add the calcium in with a supplement to get it to that level.
Of course there are those that believe you don't need all that calcium anyway but I'll leave that one for another day.

Jump to this post

Thank you for the advice. It’s so confusing, isn’t it? I’ll add 500mg of the supplements and see how that affects my stomach. I’ve had trouble with calcium supplements in the past.

REPLY
1 reply
4deborahrb | @4deborahrb | Oct 19 2:37pm
In reply to @maieva "Thank you. I feel that if I hadn’t read all these posts, I would not know..." + (show)
@maieva

Thank you. I feel that if I hadn’t read all these posts, I would not know any information. For one thing I didn’t realize we would have to be on one drug or another forever. I thought when we reached a safe level of bone density that we could stop taking drugs, but from my understanding in these posts is that this is not true. I will never take Prolia, I do know that for sure.

Jump to this post

Did you have a bad experience with Prolia ? I’ve taken it for 2 yrs with no side effects and mild improvement. It’s more of a maintenance med I think long term.

REPLY
1 reply
gravity3 | @gravity3 | Oct 19 11:03pm
In reply to @4deborahrb "Did you have a bad experience with Prolia ? I’ve taken it for 2 yrs with..." + (show)
@4deborahrb

Did you have a bad experience with Prolia ? I’ve taken it for 2 yrs with no side effects and mild improvement. It’s more of a maintenance med I think long term.

Jump to this post

May I ask how old you are?

REPLY
1 reply
4deborahrb | @4deborahrb | Oct 20 2:11am
In reply to @gravity3 "May I ask how old you are?" + (show)
@gravity3

May I ask how old you are?

Jump to this post

I am 71.

REPLY
1 reply
gravity3 | @gravity3 | Oct 20 2:29am
In reply to @4deborahrb "I am 71." + (show)
@4deborahrb

I am 71.

Jump to this post

I am 76 just finished Evenity and then my first prolia injection.
I don't mind a longer term use of Prolia but am trying towait until I am 80 (if I make it). Until then I will have two injections of prolia the hopefully back on Evenity. Then I'd have two years left til 80. I am worried about atypical femur fractures that have been reported with long term prolia use. Of course anything can happen and all could change. We each have to determine our own path on this bone journey. I forgot to mention that I just started bioidentical hormone replacement... estrogen, progesterone and testosterone. I am hoping that reintroducing these essential hormones will also help.
A great documentary on PBS.
The M Factor: Shredding the myths about menopause

REPLY
3 replies
4deborahrb | @4deborahrb | Oct 20 12:08pm
In reply to @gravity3 "I am 76 just finished Evenity and then my first prolia injection. I don't mind a..." + (show)
@gravity3

I am 76 just finished Evenity and then my first prolia injection.
I don't mind a longer term use of Prolia but am trying towait until I am 80 (if I make it). Until then I will have two injections of prolia the hopefully back on Evenity. Then I'd have two years left til 80. I am worried about atypical femur fractures that have been reported with long term prolia use. Of course anything can happen and all could change. We each have to determine our own path on this bone journey. I forgot to mention that I just started bioidentical hormone replacement... estrogen, progesterone and testosterone. I am hoping that reintroducing these essential hormones will also help.
A great documentary on PBS.
The M Factor: Shredding the myths about menopause

Jump to this post

Sounds like you have a plan! All the best to you.

REPLY
sandrac | @sandrac | Oct 21 7:46am
In reply to @maieva "Thank you for the advice. It’s so confusing, isn’t it? I’ll add 500mg of the supplements..." + (show)
@maieva

Thank you for the advice. It’s so confusing, isn’t it? I’ll add 500mg of the supplements and see how that affects my stomach. I’ve had trouble with calcium supplements in the past.

Jump to this post

My endocrinologist suggested using calcium citrate instead of calcium carbonate because it is easier on the stomach and can be taken with or without food. The dosages are different so be sure and check the indications. Works well for me.

REPLY
kristie2 | @kristie2 | Oct 21 8:57am
In reply to @gravity3 "I am 76 just finished Evenity and then my first prolia injection. I don't mind a..." + (show)
@gravity3

I am 76 just finished Evenity and then my first prolia injection.
I don't mind a longer term use of Prolia but am trying towait until I am 80 (if I make it). Until then I will have two injections of prolia the hopefully back on Evenity. Then I'd have two years left til 80. I am worried about atypical femur fractures that have been reported with long term prolia use. Of course anything can happen and all could change. We each have to determine our own path on this bone journey. I forgot to mention that I just started bioidentical hormone replacement... estrogen, progesterone and testosterone. I am hoping that reintroducing these essential hormones will also help.
A great documentary on PBS.
The M Factor: Shredding the myths about menopause

Jump to this post

May I ask why go back on Evenity ?. I did my year of Evenity and will now take 3 injections of Prolia and then on to Reclast.

REPLY
1 reply
gravity3 | @gravity3 | Oct 21 9:40am
In reply to @kristie2 "May I ask why go back on Evenity ?. I did my year of Evenity and..." + (show)
@kristie2

May I ask why go back on Evenity ?. I did my year of Evenity and will now take 3 injections of Prolia and then on to Reclast.

Jump to this post

Reclast is a bisphosphonate and I was already on alendronate for 5 years. I am trying to buy some time because unless another drug comes along I will probably have to be on prolia for the rest of my life and I do not want to go back to prolia until I am 80...if I live that long. I am 76 1/2 now. I'll take any suggestions.

REPLY
1 reply
4deborahrb | @4deborahrb | Oct 21 11:20am
In reply to @maieva "I am 66 years old and have been on Reclast for two years with some improvement..." + (show)
@maieva

I am 66 years old and have been on Reclast for two years with some improvement in my scores, although the second year my spine score went down. My endocrinologist at Mayo Clinic discussed Evenity and Tymlos and I think I am going to try Evenity since it is one year and convenient to go once a month to the clinic to get the injections. I had concerns about the black box warnings regarding heart attack and stroke, but she reassured me that she has not heard of anyone experiencing this. I also have an appointment with my cardiologist to see what he says before I start. I don’t know what else to do and yes, I’m very nervous about taking this drug, but I know it’s supposed to give me big gains in my spine where I need it the most. Any additional advice?

Jump to this post

Yikes ! I am so confused with all the info and choices. I watched the Dr. Leder presentation- I have been taking Prolia for 2 yrs with mild gain. Facing lumbar fusion, my surgeon recommended Tymlos or Forteo to build bone faster. I was on Tymlos for 4 months but couldn’t tolerate the side effects. I now understand that Tymlos following Prolia is not a good choice. Neither surgeon or Endo knew this but Endo went along with surgeon’s request. Now I’m looking at Evenity, but isn’t the prior Prolia going to affect this drug as well? I did take Alendrate many years ago with minimal effects on bone density. My last Dexa was in May of 24 so I have to wait until next yr. Any suggestions?

REPLY
2 replies
View MoreView Less
Please sign in or register to post a reply.