1. < Osteoporosis & Bone Health

My Experience on Evenity for Treating Osteoporosis

Posted by arlene7 @arlene7, Jul 7, 2020

Thought I would share for those considering or on Evenity for osteoporosis:
Afer much research and discussions with my GP and Cardiologist, I have decided to start my treatment with Evenity injections. As with all drugs, there are many side effects. My biggest concerns were stroke and heart attack. However, considering that I do no have any history for either, for me personally, the benefits outweigh the risks. As my GP said to me, "if everyone only thought about the side effects of the drugs, no one would be taking them".

I had my first injections (subcutaneously in the back of each arm) on June 30th. The nurse that administered the injections discussed the drug in depth, along with all the possibilities that may occur. She also mentioned that for all the patients that she has seen, none has had any side effects.

The injections are once a month for only one year, so I'm hoping that this works well for me and I can improve my bone density, especially in my spine, where I need it the most.

My endocronologist has also prescribed Hydrochlorthiazide for my idiopathic hypocalcemia. I have an appointment with an allergist this month to confirm whether I still have an allergy to sulfa drugs, since this drug contains sulfa. Apart from this I take D3 orally and try to obtain additional calcium through foods not supplements. Trying to walk 3-4 times a week and will begin with a few weight bearing exercises.

My journey began September, 2019 when I was diagnosed with severe osteoporosis. After waiting to see three doctors, receiving three denials from insurance company for Evenity, which took several months, I am hopefully on my way for a favorful outcome.

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

bruceandruth1970 | @bruceandruth1970 | Feb 6, 2023
In reply to @marcd "I can report on results of taking Evenity for a year and a half. DEXA scan..." + (show)
@marcd

I can report on results of taking Evenity for a year and a half.

DEXA scan results at lumbar spine are as follows:

After one year: BMD increased by 10.4% over baseline (before any treatment)

After one year and six months: BMD increased by an additional 10.3% for a total increase of 21.7% increase from baseline.

Both of my osteoporosis docs (see elsewhere this thread) felt that lumbar spine measurements are the significant measurements that accurately reflect the progress of treatment.

I plan to continue Evenity for the full two year course of treatment.

My current thinking is that I will then do the following:

Take risedronate oral (alendronate) for a period of time to be determined.

Do DEXA scans and bone marker tests at periodic intervals.

When bone markers return to a level that indicates that I can benefit, return to Evenity for another course of treatment.

I would be interested in thoughts, information or suggestions in regard to the above.

In a previous post, I provided information about a study of Evenity administered for two years. However, I cannot find that post. Please advise if I should re-post that information.

I am not sure if this is the correct place to post this information about my results... maybe it needs a new post. If yes, please let me know.

Jump to this post

I would be interested in your reposting about the study of Evenity administered for two years.

REPLY
1 reply
bruceandruth1970 | @bruceandruth1970 | Feb 6, 2023
In reply to @marcd "Attached is study of Evenity treatment for two years / twenty four months" + (show)
@marcd

Attached is study of Evenity treatment for two years / twenty four months

Jump to this post

Thank you so much for this as I am scheduled to start Evenity in March.

REPLY
solveigsp | @solveigsp | Feb 6, 2023
In reply to @marcd "I can report on results of taking Evenity for a year and a half. DEXA scan..." + (show)
@marcd

I can report on results of taking Evenity for a year and a half.

DEXA scan results at lumbar spine are as follows:

After one year: BMD increased by 10.4% over baseline (before any treatment)

After one year and six months: BMD increased by an additional 10.3% for a total increase of 21.7% increase from baseline.

Both of my osteoporosis docs (see elsewhere this thread) felt that lumbar spine measurements are the significant measurements that accurately reflect the progress of treatment.

I plan to continue Evenity for the full two year course of treatment.

My current thinking is that I will then do the following:

Take risedronate oral (alendronate) for a period of time to be determined.

Do DEXA scans and bone marker tests at periodic intervals.

When bone markers return to a level that indicates that I can benefit, return to Evenity for another course of treatment.

I would be interested in thoughts, information or suggestions in regard to the above.

In a previous post, I provided information about a study of Evenity administered for two years. However, I cannot find that post. Please advise if I should re-post that information.

I am not sure if this is the correct place to post this information about my results... maybe it needs a new post. If yes, please let me know.

Jump to this post

I reported earlier that I thought I would stop the Evenity injections after 7 months but now have changed my mind. My aches were muscle related from not enough exercise and too much tension. So I’m increasing my exercise - especially weight bearing exercises. I hope that will make a big difference.

REPLY
1 reply
paala | @paala | Feb 6, 2023
In reply to @marcd "I can report on results of taking Evenity for a year and a half. DEXA scan..." + (show)
@marcd

I can report on results of taking Evenity for a year and a half.

DEXA scan results at lumbar spine are as follows:

After one year: BMD increased by 10.4% over baseline (before any treatment)

After one year and six months: BMD increased by an additional 10.3% for a total increase of 21.7% increase from baseline.

Both of my osteoporosis docs (see elsewhere this thread) felt that lumbar spine measurements are the significant measurements that accurately reflect the progress of treatment.

I plan to continue Evenity for the full two year course of treatment.

My current thinking is that I will then do the following:

Take risedronate oral (alendronate) for a period of time to be determined.

Do DEXA scans and bone marker tests at periodic intervals.

When bone markers return to a level that indicates that I can benefit, return to Evenity for another course of treatment.

I would be interested in thoughts, information or suggestions in regard to the above.

In a previous post, I provided information about a study of Evenity administered for two years. However, I cannot find that post. Please advise if I should re-post that information.

I am not sure if this is the correct place to post this information about my results... maybe it needs a new post. If yes, please let me know.

Jump to this post

Thank you for posting your results. Very helpful and quite amazing. I have not seen information on 2 year Evenity treatment. My doc said 12 months only then Reclast. Have you experienced any side effects?

REPLY
marcd | @marcd | Feb 7, 2023

I work out daily -- weight lifting or fast walking on trails. After Evenity I sometimes think that I may get tired a little faster... but there could be other factors so not sure. A bit of tenderness at injection site. Less than a flu shot. No other side effects that I have noticed.

REPLY
marcd | @marcd | Feb 7, 2023
In reply to @solveigsp "I reported earlier that I thought I would stop the Evenity injections after 7 months but..." + (show)
@solveigsp

I reported earlier that I thought I would stop the Evenity injections after 7 months but now have changed my mind. My aches were muscle related from not enough exercise and too much tension. So I’m increasing my exercise - especially weight bearing exercises. I hope that will make a big difference.

Jump to this post

It is possible that my results from Evenity are related to the fact that I do regular weight bearing exercise. Since Evenity builds bone, and weight bearing exercise builds bone, the two might work in a synergistic fashion... maybe.

REPLY
pedsnurse61 | @pedsnurse61 | Feb 8, 2023

Sorry I have been off this site for awhile. I went to a new Rheumatologist recently and I decided to start Evenity which my Insurance Company has approved. There is a co-payment program which also helps with the cost. I am still worried about the side effects but my new MD advised me that I have to be on something since my last Dexa Scan is worse. I have been off medications for 6 years since none of them have helped. My new Rheumatologist has never had a patient like me before that didn't respond to any medications. I will update this site with my progress and will continue to read other comments. I feel that Education is needed and the support I have read from other fellow Osteoporosis folks has helped me a lot.

REPLY
cootcatmary | @cootcatmary | Feb 8, 2023

I got my first injections less than a week ago. I am getting excruciating, shooting pain in my hip. It doesn't last and it's not often but I'm getting nervous that this might be a side effect of the medication.

REPLY
1 reply
windyshores | @windyshores | Feb 8, 2023
In reply to @cootcatmary "I got my first injections less than a week ago. I am getting excruciating, shooting pain..." + (show)
@cootcatmary

I got my first injections less than a week ago. I am getting excruciating, shooting pain in my hip. It doesn't last and it's not often but I'm getting nervous that this might be a side effect of the medication.

Jump to this post

@cootcatmary I always wonder if I am having "growing pains" as the bone grows! (I am on Tymlos) Or something is healing. It's nice to think these positive thoughts but sometimes it is a side effect! I try to give it time but pain is hard.

The results posted with two years on Evenity are impressive. I am getting close to the end of my Tymlos and reading this thread in case I can follow up with Evenity!

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