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.

gravity3 | @gravity3 | Oct 13 4:56am
In reply to @windyshores "@mancos one other thing to think about: I read that Tymlos "eats D3" and I kept..." + (show)
@windyshores

@mancos one other thing to think about: I read that Tymlos "eats D3" and I kept mine stable at 50 or so by upping my intake to 3,000 units/day. When I stopped Tymlos my level started to rise so I backed down to 1,000-2,000 units depending on the season. I don't wear sun screen!

I cannot believe you take 15,000 units and your level is 35. Do you take a liquid, or gummy, or pill?

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Would taking a d3 supplement that contains K2 make a difference or at least a separate k2

REPLY
1 reply
kristie2 | @kristie2 | Oct 13 8:48am
In reply to @gravity3 "I just finished Evenity. My endocrinologist wanted me to wait 5 mo. But I was concerned...." + (show)
@gravity3

I just finished Evenity. My endocrinologist wanted me to wait 5 mo. But I was concerned. Checked the prolia website and the say 1 months and 7 days. I emailed him my concern and he called me and said he had contacted some other "bone docs) and some do 6 mo and some 1 mo. I hate that their is so much is unknown. Scary!

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I would be very concerned waiting this long. I only skipped a month and 10 days until I started Prolia. I would never wait 6 months that’s just my opinion from what I have read .

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mancos | @mancos | Oct 13 4:38pm
In reply to @windyshores "@mancos one other thing to think about: I read that Tymlos "eats D3" and I kept..." + (show)
@windyshores

@mancos one other thing to think about: I read that Tymlos "eats D3" and I kept mine stable at 50 or so by upping my intake to 3,000 units/day. When I stopped Tymlos my level started to rise so I backed down to 1,000-2,000 units depending on the season. I don't wear sun screen!

I cannot believe you take 15,000 units and your level is 35. Do you take a liquid, or gummy, or pill?

Jump to this post

I am taking a liquid Vit D3 made by Barleen’s. I take 3 doses of 5,000 IU 3 times a day (15,000 IU total). Prior to this I had taken both pills & gummies. Because of my malabsorption issues from my bariatric surgery, they wanted me to take it in liquid form.

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mancos | @mancos | Oct 13 4:39pm
In reply to @gravity3 "Would taking a d3 supplement that contains K2 make a difference or at least a separate..." + (show)
@gravity3

Would taking a d3 supplement that contains K2 make a difference or at least a separate k2

Jump to this post

I also take separate K2.

REPLY
1 reply
bwaykm | @bwaykm | Oct 14 9:27am
In reply to @mancos "I also take separate K2." + (show)
@mancos

I also take separate K2.

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How much do you take?

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2 replies
bwaykm | @bwaykm | Oct 14 9:29am
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?

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I am in the same boat as you. Very scared to start, but my spine has lot 7% last year.

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mancos | @mancos | Oct 14 12:06pm
In reply to @bwaykm "How much do you take?" + (show)
@bwaykm

How much do you take?

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I take 100 mcg/day.

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daisy17 | @daisy17 | Oct 14 12:10pm
In reply to @bwaykm "How much do you take?" + (show)
@bwaykm

How much do you take?

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I take K2 with my calcium plus D supplements. I alternate between these two: New Chapter Bone Strength (calcium carbonate) which contains 35mcg of K1 and 45mcg of K2, and then Citrical (calcium citrate) which doesn't contain K so I supplement it with Solaray 50mcg K2.

REPLY
mancos | @mancos | Oct 14 12:12pm
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?

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Thanks for sharing this info.

REPLY
maieva | @maieva | Oct 15 9:57pm
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

So I just received my first Evenity injections yesterday. I had no pain or redness, just a lump on one arm that dissipated today. I do have a slightly stuffed up nose and a dull headache. Hopefully that is all I get. The nurse who administered the shots at the Mayo Clinic was very encouraging about this drug and said that everyone seems to do well on it. I am 66 with pretty bad scores. I took Reclast for two years and had some improvement and I’m now on Evenity for a year. I am so hopeful for good results. I feel like a ticking time bomb waiting for that first fracture and I don’t do any of the activities I used to enjoy because I’m afraid of fracturing my spine. My PT I went to said that I didn’t have to worry that much about that, but I’ve read all of these posts and I feel that a lot of the exercises she was having me do (bending from the waist to touch toes, etc) were not good. There is so much conflicting information out there, it’s hard to know what to do. Trying to explain to family that no, I can’t do things or lift grandkids is very heartbreaking because they don’t get it. Anyway, I’m on this journey and will let you know how I do. Also had a ekg and am scheduled for a cadioechogram on Monday to make sure all is good in that area.

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