Anyone taken Evenity (romosozumab) for Osteoporosis?

Posted by arlene7 @arlene7, May 27, 2020

Has anyone taken Evenity? I understand it’s only been on the market for a little over a year. I’m hoping it will help with my severe osteoporosis. Any information is helpful.

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@windyshores

If Reclast is used as a follow up for other meds, my doc told me that a break from meds might be possible, since it stays in the system so long. My doc will monitor what is happening, not sure how. Also Dr. McCormick suggests CTX and P1NP tests to see what is going on and anticipate the need to do more Reclast, or alendronate.
Obviously no break is possible with Prolia and I would worry about the effects of long term anti-resorption in terms of jaw and femur fractures. Our docs can inform and I also read McCormick's new book Great Bones.

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Thank you for the input. When you say a ‘break from meds might be possible’, you mean AFTER 1st Reclast yearly ? Trying to anticipate how soon after last Evenity I need to start new meds. I recall reading something to the effect of ‘one month + or - 7 days.
CTX is what??? I have done 24 hour calcium urine test, and CBC. but want to make sure that my endocrinologist requests all necessary bloodwork PRIOR to start of next drug. Thank you in advance for indulging my follow-up questions.

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@sedrake51

So delighted to hear that you did not have adverse reactions. Great start on your Evenity journey!

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So glad to hear you are off to a positive start. Not unusual for back of arms to swell before the day is up. A bit uncomfortable sleeping on side, but for me it was gone by the morning. I’m a fan of behind the back of each arm.

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@rhondat23

I've had my first round of injections. I had both shots in my stomach. The needle was small and the injection felt like a small pinch. My stomach was uncomfortable for about three days. But overall I feel fine.

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Try the back of the arms. I’ve had shots at both UCLA & Penn Medicine - all injections done back of each arm.

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@betsee

Thank you for the input. When you say a ‘break from meds might be possible’, you mean AFTER 1st Reclast yearly ? Trying to anticipate how soon after last Evenity I need to start new meds. I recall reading something to the effect of ‘one month + or - 7 days.
CTX is what??? I have done 24 hour calcium urine test, and CBC. but want to make sure that my endocrinologist requests all necessary bloodwork PRIOR to start of next drug. Thank you in advance for indulging my follow-up questions.

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My doc doesn't do CTX. It seems most endocrinologists don't do that kind of blood work. I believe P1NP is an indicator of bone building and CTX is a measure of bone turnover. But docs don't seem to use these,

Yes a break after one or possibly two Reclasts depending on testing. I wonder, at this point, if my doc will do CTX and P1NP or what my doc means by "monitoring"....maybe DEXA? I am getting a second opinon next week and will ask.

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I was on Fosamax for some years then Reclast for 5 years. Was drug free for quite a few years until Dexa in 2021 showed severe osteoporosis. Started on Prolia. Between Jan 2022 and April 2023, I had 3 fractures due to osteoporosis each requiring surgery. Doctor said Prolia not effective and stated Tymlos last week. When I asked about treatment after Tymlos was told “will discuss later “. Did anyone take Tymlos prior to Evenity?

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@susanfalcon52

I had my second round of Evenity injections two days ago.
No side effects other than a little swelling at injection site.

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I hope you continue to have minimal side effects. I go tomorrow for my 5th set of injections. After my 4th set, I started to feel some other side effects that I am now not happy with. I will discuss this tomorrow when I see the MD. I also want him to order some blood work that I feel is needed based on the book " Good Bones" which I feel everyone should read.

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@betsee

Thank you for the input. When you say a ‘break from meds might be possible’, you mean AFTER 1st Reclast yearly ? Trying to anticipate how soon after last Evenity I need to start new meds. I recall reading something to the effect of ‘one month + or - 7 days.
CTX is what??? I have done 24 hour calcium urine test, and CBC. but want to make sure that my endocrinologist requests all necessary bloodwork PRIOR to start of next drug. Thank you in advance for indulging my follow-up questions.

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I encourage you to read " Great Bones" by Dr McCormick, he goes into detail which lab work should be done prior to starting any medication. It is a great resource for anyone who has Osteoporosis.

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@windyshores

@kay44, only bisphosphonates "hold you for awhile without needing further drugs." Not true for Prolia (especially!), Tymlos, Forteo or Evenity.

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I have no idea about the other drugs. I can only tell you that my Physician said Reclast and Bosphosphonate stay in your bones for a long time, that why I have the dental problems and dificulty having extractions and implants.

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@kay44

I have no idea about the other drugs. I can only tell you that my Physician said Reclast and Bosphosphonate stay in your bones for a long time, that why I have the dental problems and dificulty having extractions and implants.

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@kay44 how long were you on a bisphosphonate/Reclast and what dental problems?

Dentists are really afraid to do extractions, implants etc. but the serious issues, my doc said, are mainly with cancer patients on high doses and/or folks on them for a long time. Prolia and Reclast and other bisphosphonates are all anti-resorptives and I was told Evenity is too for the last half of treatment.

Having on infusion of Reclast after a bone-builder "locks in" gains and because it stays around for awhile, we might be able to take a break in meds. So that is a positive side to the long lasting effect of Reclast.

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@windyshores

@pedsnurse61 if you do Prolia you will eventually do Reclast or another bisphosphonate anyway because you cannot just stop Prolia without quickly losing what you gained.

In his new book "Great Bones," Dr, Keith McCormick explains that Reclast stays in the system much longer than Prolia, with a very long half life of 10 years, so you can safely take a break from meds once your gains have been "locked in."

You can do Prolia for a few years, but you also, according to the same book, have to be careful about the timing of the switch to Reclast from Prolia. If too soon, the Reclast won't work and if too late, the rebound effect of stopping Prolia could already kick in. He suggests doing CTX tests to determine timing.

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Right- I keep reading about the very long half life of Reclast- that it stays in your body virtually forever.
I read one explanation that as it’s deposited in your bones, the osteoclasts do their thing ( breaking down bone) thus releasing the Reclast.
So I’m wondering why we’re advised to take it every year for 3-5 years???

I also read another study that said a half dose, as well as every 18-24 months is as effective as usual administration.

* I’d post a link but the studies don’t allow it somehow. If interested I can try to post that.

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