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.

nwyatt | @nwyatt | Jan 27 9:18am
In reply to @windyshores "@nwyatt I am curious how osteoporosis and fractures could cause arthritis. I think of them as..." + (show)
@windyshores

@nwyatt I am curious how osteoporosis and fractures could cause arthritis. I think of them as separate entities.

Evenity inhibits sclerostin. People with osteoarthritis and rheumatoid arthritis have low sclerostin naturally, so low sclerositin is associated with these issues. It is possible therefore that Evenity could cause or exacerbate arthritis of both kinds, though whether that is temporary or permanent has not been determined. One doc told me that 40 % of his Evenity patients have joint pain. It is a new drug but I personally hope that any effects are short term and it seems the pain fades, from various posts on forums.

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I may have misunderstood the doctor. We were discussing my compression fractures (which have healed) and my increasing and pretty constant back tightness and pain. He said it was due to the arthritis in my spine and I guess I assumed they were connected.
Do you know how long it took the pain from Evenity lasted? It did start to increase about 2 weeks after my first injections in June and has increased until now.

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1 reply
windyshores | @windyshores | Jan 27 9:39am
In reply to @nwyatt "I may have misunderstood the doctor. We were discussing my compression fractures (which have healed) and..." + (show)
@nwyatt

I may have misunderstood the doctor. We were discussing my compression fractures (which have healed) and my increasing and pretty constant back tightness and pain. He said it was due to the arthritis in my spine and I guess I assumed they were connected.
Do you know how long it took the pain from Evenity lasted? It did start to increase about 2 weeks after my first injections in June and has increased until now.

Jump to this post

I don't know how long pain lasts from Evenity. It is so new and docs don't seem to know either. Maybe there are studies online-?

I don't think spinal fractures "heal" though docs use that term. They stabilize but the structural changes remain. I have a lot of back pain and tightness, much of it from muscle spasms caused by the fracture and shortening of the spine.

A few days ago I lifted three bowls at once onto a shelf above my head and that kind of mistake- stupid me- can cause a couple of weeks of worse pain. If I stay in bed with pillows for a few days, it helps after I do something unwise.
ps I also have some arthritis 🙂

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1 reply
nwyatt | @nwyatt | Jan 27 10:22am
In reply to @windyshores "I don't know how long pain lasts from Evenity. It is so new and docs don't..." + (show)
@windyshores

I don't know how long pain lasts from Evenity. It is so new and docs don't seem to know either. Maybe there are studies online-?

I don't think spinal fractures "heal" though docs use that term. They stabilize but the structural changes remain. I have a lot of back pain and tightness, much of it from muscle spasms caused by the fracture and shortening of the spine.

A few days ago I lifted three bowls at once onto a shelf above my head and that kind of mistake- stupid me- can cause a couple of weeks of worse pain. If I stay in bed with pillows for a few days, it helps after I do something unwise.
ps I also have some arthritis 🙂

Jump to this post

Guess that's the downside of taking such a new medication. Where is your pain and tightness located? Mine is in the thoracic region. Have you found any stretches, exercises or pain relievers that help? I was prescribed meloxicam but it's been 4 days and no relief. I know it can take a bit, I was just hoping for a little relief by now. I also use ice which seems to work better for me than heat.
This all sounds so familiar.

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1 reply
windyshores | @windyshores | Jan 27 3:41pm
In reply to @nwyatt "Guess that's the downside of taking such a new medication. Where is your pain and tightness..." + (show)
@nwyatt

Guess that's the downside of taking such a new medication. Where is your pain and tightness located? Mine is in the thoracic region. Have you found any stretches, exercises or pain relievers that help? I was prescribed meloxicam but it's been 4 days and no relief. I know it can take a bit, I was just hoping for a little relief by now. I also use ice which seems to work better for me than heat.
This all sounds so familiar.

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My pain and tightness is mainly under the diaphragm @nwyatt. It did get better after 4 days but continues to simmer now and then a month later.

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hopefullibrarian | @hopefullibrarian | Jan 28 4:04pm

In some of the comments in this tread, the possiblity of HRT treatment following Evenity has been mentioned. Has anyone actually done this? Does anyone know of a source of info or have any personal experience transitioning from Evenity to HRTs?
I've been researching how Evenity works, and trying to figure out what happens physiologically after the treatment ends. I haven't been able to find any clear info maybe because Evenity is so new[?]. The recommended follow-up is usually a bisphosphonate, but is that the only option?
I get my first Evenity injection tomorrow, so I have some time to figure out what's next.
This may have already been answered by someone in our group. If so, please point me in the right direction to read about it.

REPLY
3 replies
windyshores | @windyshores | Jan 29 4:18am
In reply to @hopefullibrarian "In some of the comments in this tread, the possiblity of HRT treatment following Evenity has..." + (show)
@hopefullibrarian

In some of the comments in this tread, the possiblity of HRT treatment following Evenity has been mentioned. Has anyone actually done this? Does anyone know of a source of info or have any personal experience transitioning from Evenity to HRTs?
I've been researching how Evenity works, and trying to figure out what happens physiologically after the treatment ends. I haven't been able to find any clear info maybe because Evenity is so new[?]. The recommended follow-up is usually a bisphosphonate, but is that the only option?
I get my first Evenity injection tomorrow, so I have some time to figure out what's next.
This may have already been answered by someone in our group. If so, please point me in the right direction to read about it.

Jump to this post

Evenity is so new there is little info. Amgen suggests Prolia (they make both) and all my docs say Reclast (or another bisphosphonate if not tolerated). I have read somewhere that HRT is not strong enough to stop the rebound when stopping Prolia but I don't know if anyone knows about that with Evenity. I am also wondering about optimal timing of Reclast after Evenity.

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1 reply
gravity3 | @gravity3 | Jan 29 4:48am
In reply to @windyshores "Evenity is so new there is little info. Amgen suggests Prolia (they make both) and all..." + (show)
@windyshores

Evenity is so new there is little info. Amgen suggests Prolia (they make both) and all my docs say Reclast (or another bisphosphonate if not tolerated). I have read somewhere that HRT is not strong enough to stop the rebound when stopping Prolia but I don't know if anyone knows about that with Evenity. I am also wondering about optimal timing of Reclast after Evenity.

Jump to this post

I would to know about best timing for starting reclast after evenity too

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2 replies
susanfalcon52 | @susanfalcon52 | Jan 29 7:02am
In reply to @hopefullibrarian "In some of the comments in this tread, the possiblity of HRT treatment following Evenity has..." + (show)
@hopefullibrarian

In some of the comments in this tread, the possiblity of HRT treatment following Evenity has been mentioned. Has anyone actually done this? Does anyone know of a source of info or have any personal experience transitioning from Evenity to HRTs?
I've been researching how Evenity works, and trying to figure out what happens physiologically after the treatment ends. I haven't been able to find any clear info maybe because Evenity is so new[?]. The recommended follow-up is usually a bisphosphonate, but is that the only option?
I get my first Evenity injection tomorrow, so I have some time to figure out what's next.
This may have already been answered by someone in our group. If so, please point me in the right direction to read about it.

Jump to this post

hopefullibrarian,
Best of luck to you with your first Evenity injections!
I have tolerated 8 months of Evenity well. I was fatigued for a day after the first shots. I wish you an easy and successful year.

REPLY
windyshores | @windyshores | Jan 29 7:10am
In reply to @gravity3 "I would to know about best timing for starting reclast after evenity too" + (show)
@gravity3

I would to know about best timing for starting reclast after evenity too

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@gravity3 I am meeting with a highly rated osteoporosis doc tomorrow and am asking about the timing of Reclast after Evenity and will post the answer she gives!

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1 reply
gravity3 | @gravity3 | Jan 29 7:14am

Good luck with you appt. I appreciate your willingness to share what you learn.

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