1. < Osteoporosis & Bone Health

Only 53 with severe osteoporosis and about to fearfully take Evenity

Posted by songbird18 @songbird18, Feb 24 11:24am

I am 53 and just got an awful bone density result. (Spine T score 4.1, hip 3.5). The rheumatologist is going to put me on Evenity for a year but I am so afraid after reading about the dangers of heart attack and stroke. The doctor also told me you can’t get any dental work done, but you never know when you are going to have a tooth emergency. I don’t feel I have a choice but to take it because my bones are so bad and my back is in constant pain. I’m wondering if anyone has been using Evenity and how it has affected them. Thank you!

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windyshores | @windyshores | Oct 5 7:26am
In reply to @pami "I am about to have my 8th shots of Evenity. Minimal side effects. Pain, swelling and..." + (show)
@pami

I am about to have my 8th shots of Evenity. Minimal side effects. Pain, swelling and rash at injection site. That was significantly reduced by taking Claritin prior to getting my shots. I am concerned about a follow up drug. I have had a total of 5 years of Reclast off and on over a ten year period. My kidney function is reduced and I worry it is the Reclast. That may leave Prolia as my only option. Anyone else with reduced kidney function due to Reclast or bisphosphates?

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@pami my kidney function dropped in 2022 for unknown reasons (I have a lupus diagnosis). My endo ordered a 20% "test dose" of Reclast after Tymlos/Evenity, which is 1 mg. He also ordered IV hydration and a slow one hour infusion. My kidneys did okay.

There is discussion on another thread on the effectiveness of 2mg vs 4 mg of zoledronic acid. I am not sure if I have done enough to "lock in" gains on the other two meds but am going to discuss with my doctor whether I need to do more Reclast. My hope is to do Forteo or more Evenity. I did two years of Tymlos and only 4 months of Evenity. My doc won't prescribe Prolia unless absolutely necessary due to rebound. When I am over 80 I would consider it though any possible effect on immune system concerns me.

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1 reply
pami | @pami | Oct 5 8:27am
In reply to @windyshores "@pami my kidney function dropped in 2022 for unknown reasons (I have a lupus diagnosis). My..." + (show)
@windyshores

@pami my kidney function dropped in 2022 for unknown reasons (I have a lupus diagnosis). My endo ordered a 20% "test dose" of Reclast after Tymlos/Evenity, which is 1 mg. He also ordered IV hydration and a slow one hour infusion. My kidneys did okay.

There is discussion on another thread on the effectiveness of 2mg vs 4 mg of zoledronic acid. I am not sure if I have done enough to "lock in" gains on the other two meds but am going to discuss with my doctor whether I need to do more Reclast. My hope is to do Forteo or more Evenity. I did two years of Tymlos and only 4 months of Evenity. My doc won't prescribe Prolia unless absolutely necessary due to rebound. When I am over 80 I would consider it though any possible effect on immune system concerns me.

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Thank you for your reply! I will look for the thread on the different doses of Reclast. I am also apprehensive to go on Prolia after Evenity. I had 2 years of Prolia before Evenity and am anxious to see if I get good results or not. My back feels better. I feel like you...I would choose to be on Prolia if I was 80. I am 70.
My best to you along this rocky osteoporosis path.

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njhornung | @normahorn | Oct 5 9:09am

Those of us with compromised immune systems may find Prolia unacceptable no matter how old we are. I know I do not want what little immune system I have further reduced.

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broken13 | @broken13 | Oct 5 2:30pm
In reply to @windyshores "@broken13 there has been frequent discussion here, and with my own doctor, about the risky rebound..." + (show)
@windyshores

@broken13 there has been frequent discussion here, and with my own doctor, about the risky rebound from Prolia. Some posters are doing just one year of Prolia then transitioning to a bisphosphonate like Reclast or Fosamax. The shorter duration of Prolia apparently (according to McCormick, author of "Great Bones" and many posters on here) helps to reduce the rebound.

My own doctor won't use Prolia at all. It seems people are getting a boost for that one year and then "lock in" gains with a bisphosphonate. I have no personal experience with this and am just repeating the experience of others on Connect for you to investigate further. I went directly to Reclast after Evenity (and Evenity was after Tymlos).

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Thank you for sharing that. I will look into Reclast. At least I have a year of Evenity to do my research before deciding. I was happily on Evista for the past 5 years, after two years of forteo. However apparently lost very minute increments in bone density that over that time, is now needing to be addressed.

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kallettla | @kallettla | Oct 6 9:08am
In reply to @pami "I am about to have my 8th shots of Evenity. Minimal side effects. Pain, swelling and..." + (show)
@pami

I am about to have my 8th shots of Evenity. Minimal side effects. Pain, swelling and rash at injection site. That was significantly reduced by taking Claritin prior to getting my shots. I am concerned about a follow up drug. I have had a total of 5 years of Reclast off and on over a ten year period. My kidney function is reduced and I worry it is the Reclast. That may leave Prolia as my only option. Anyone else with reduced kidney function due to Reclast or bisphosphates?

Jump to this post

My friend had kidney cancer and has recovered from it. Reclast is the only osteoporosis medication her Dr will give her. I don't know anything else about it. It made her sick for a week, like the flu. My Dr said it sometimes happens with the first injection.

I am on Evenity with just a sore injection site for a few days. Will go on Reclast after.

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lhankins | @lhankins | Oct 6 10:08am
In reply to @katwhisperer "it's great that so many can try evenity and their insurance authorizes it. For some reason,..." + (show)
@katwhisperer

it's great that so many can try evenity and their insurance authorizes it. For some reason, my insurance company allows Forteo and Tymlos, but not Evenity. Hoping that's just due to the drug's relative newness in the market and they may reconsider in another 1-2 years.

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Same here, my insurance would only cover Evenity if I had tried and couldn’t tolerate Forteo or Tymlos.

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daph | @daph | Oct 6 10:57am
In reply to @daph "I’m 53. Chose evenity for same reasons and have had no side effects. Also had a..." + (show)
@daph

I’m 53. Chose evenity for same reasons and have had no side effects. Also had a tooth crown a couple months ago while on evenity and also no issues. Hoping my BMD goes up lots.

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Update- I finished all 12 sets of injections and a reclast infusion after.. no issues. My BMD improved 10-15% in each area

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hme | @hme | Oct 6 1:17pm

So sorry and I know it is scary!!
I just got my scan back and my numbers are close to your numbers. Ugh
Suggested fosamax for me but I’m still doing my research and I’m freaked out too!
Good luck and know there are a lot of us going through this with you!!! 🙏🙏

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susaniqbal | @susaniqbal | Oct 6 2:06pm

I have severe osteoporosis too, along with a failed back surgery. I’ve had two doses and so far there has been no side effects.

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aria817 | @aria817 | Oct 6 11:52pm

My T score is close to yours. Do you have a back fracture? I have pain as well and need a back x- ray. This is all new to me abd I am scared. Just started Fosamax from my primary care. No idea what kind of doctor to go to.

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