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.

callalloo | @callalloo | May 18, 2022
In reply to @lbmorgan44 "I am currently on Evenity which is in the same drug group as Tymlos and Forteo...." + (show)
@lbmorgan44

I am currently on Evenity which is in the same drug group as Tymlos and Forteo. I have read that Evenity is approved for use after Forteo or Tymlos; however, once Evenity is administered, you cannot go on Tymlos or Forteo.

My Endocrinologist is recommending Prolia after I complete the one-year course of Evenity. Prolia blocks the resorption of bone and will help retain the bone that is created from the use of Evenity. Note that Prolia also slows the entire bone remodeling process. Clinical trials for Prolia are 3-4 years long and it "might" be safe up to 8 years according to Mayo Clinic. Since Prolia does not build bone, when it is stopped there is a more rapid breakdown of bone which increases the risk for spinal fractures. After reading the negative reports on Prolia I am reluctant to take it.

What about going back on Evenity/Tymlos/Forteo after Prolia? The book Mayo Clinic on Osteoporosis by Anne Kearns, M.D., Ph.D. on page 163 states that taking Evenity/Tymlos/Forteo after stopping Prolia can be associated with limited improvements in bone density or even bone loss. It seems to me that going ON Prolia has significant consequences. Then going OFF Prolia becomes a dead end, at least for me.

Going on Prolia, for me, will give me a few quality years IF I have no side effects. Since there is nothing I can take when I go off of it, and bone loss is a given when going off Prolia, why would I take it in the first place?

What are the next choices and consequences when Prolia is no longer an option and I cannot tolerate the bisphosphonates (Fosamax and Reclast type drugs) and Tymlos Forteo and Evenity are also not options?

I am researching estrogen and estrogen-related medications to treat osteoporosis. There is Raloxifene/Evista in a class of drugs called Selective Estrogen Receptor Modulators (SERMs). This medication is supposed to improve bone density and prevent spinal fractures. It is not as effective on hips and wrist fractures. A drug called Duavee is in a different classification of drugs and helps maintain bone density and reduces the risk of fractures. It is used primarily to prevent osteoporosis, but not treat it. The risks of hormone therapy are lower for younger women than for those age 60 or older. These two estrogen-related medications carry the risk of deep vein thrombosis (DVT), blood clots in lungs and strokes.

I have always been active, eaten a well-balanced diet and have been taking calcium, Vitamin D along with other supplements as I watched my DEXA scores drop. Osteoporosis has no cure and all categories of mediations to stop bone loss or build new bone present their own challenges and significant consequences and have a limited timeframes for usage.

What I am seeking is quality of life, not longevity. Choosing from narrowing treatment options is also choosing how my final years will be spent. All choices have significant consequences. Given that, I can only make the best decision for my situation. I have a few more months of research before the year-long treatment of Evenity is completed and a decision must be made for the next step.

I plan to continue to post any information I find that has been well researched and might be helpful for those of us trying to make difficult decisions about our health.

Jump to this post

For what it's worth, and opinions can vary among doctors, my endocrinologist told me that Evista is not a good SERM ot osteoporosis drug. He said that it's being marketed as a two-for but does neither job well. Just one opinion but I toss it in here as you're in research mode. I truly wish there were better choices for osteoporosis drugs as all of them have issues, though some are worse than others. I think that the future for osteoporosis care will rely on more data than the DEXA results and maybe genetic testing can identify a more precise path for prevention and treatment for an individual.

REPLY
1 reply
Mentor
Chris Trout, Volunteer Mentor | @artscaping | May 18, 2022
In reply to @conniedunfield "Hi, I'm Connie, 74 yrs. old & have severe Osteoporosis. Fosamax wasn't working well enough and..." + (show)
@conniedunfield

Hi, I'm Connie, 74 yrs. old & have severe Osteoporosis. Fosamax wasn't working well enough and was suggested I go on Evenity for one year then they'll give me the IV reclast. Evenity has a big side effect of "Strokes" which is a huge concern. I have a healthy heart, so why do I want to risk my heart health? But do I want to risk falling and shattering a hip? So I've elected to try Evenity. I'm trying to be positive, but don't want to spend a year worrying about heart failure at some level. I'm glad I found this blog, other people's thoughts have eased my mind. Also, I'm having further conversations with my endocrinologist to see how they're going to monitor me throughout the year; a little hand holding will help....plus a lot of prayers. Thank you

Jump to this post

Good evening Connie. I am in exactly the same place. I did two years of Tymlos without any side effects and my scores went down to Osteopenia. And then I came to a curve in the road. I am highly allergic to bisphosphonates. When I first started I was given Boniva. Within a month, I had to stop it and turn to Tymlos. Now, the only option that is not bisphosphonate is Prolia.

The side effects have been disturbing. I have had dental specialists review my X-rays and everything is fine. And if I do need dental work in the future, I can stop Prolia for a few weeks, then go back to Prolia. At least that is their recommendation. My question is this. How do you stop for a few weeks when Prolia is a twice a year injection?

Still searching for answers and perhaps a new option. Let's hold hands with each other on this complicated journey. What is your major concern?

May you be safe, protected, and free from inner and outer harm.
Chris

REPLY
4 replies
windyshores | @windyshores | May 18, 2022
In reply to @artscaping "Good evening Connie. I am in exactly the same place. I did two years of Tymlos..." + (show)
@artscaping

Good evening Connie. I am in exactly the same place. I did two years of Tymlos without any side effects and my scores went down to Osteopenia. And then I came to a curve in the road. I am highly allergic to bisphosphonates. When I first started I was given Boniva. Within a month, I had to stop it and turn to Tymlos. Now, the only option that is not bisphosphonate is Prolia.

The side effects have been disturbing. I have had dental specialists review my X-rays and everything is fine. And if I do need dental work in the future, I can stop Prolia for a few weeks, then go back to Prolia. At least that is their recommendation. My question is this. How do you stop for a few weeks when Prolia is a twice a year injection?

Still searching for answers and perhaps a new option. Let's hold hands with each other on this complicated journey. What is your major concern?

May you be safe, protected, and free from inner and outer harm.
Chris

Jump to this post

Chris are you allergic or sensitive? Are you sure it is the active medication? I ask because I can only take pills from certain manufacturers: I have neurological symptoms from some companies' meds.

Did you try an infusion? If so, with hydration, meds and slow infusion?

Would Benadryl before an infusion help or is your allergic reaction ongoing for days or weeks?

I am only asking because I am going to have to try an infused biphosphonate myself after Tymlos and tend to react to a lot of meds.

REPLY
1 reply
lbmorgan44 | @lbmorgan44 | May 18, 2022
In reply to @callalloo "For what it's worth, and opinions can vary among doctors, my endocrinologist told me that Evista..." + (show)
@callalloo

For what it's worth, and opinions can vary among doctors, my endocrinologist told me that Evista is not a good SERM ot osteoporosis drug. He said that it's being marketed as a two-for but does neither job well. Just one opinion but I toss it in here as you're in research mode. I truly wish there were better choices for osteoporosis drugs as all of them have issues, though some are worse than others. I think that the future for osteoporosis care will rely on more data than the DEXA results and maybe genetic testing can identify a more precise path for prevention and treatment for an individual.

Jump to this post

Thanks for the feedback on Evista. I have just begun research on the estrogen related drugs for osteoporosis. It is good to know your doctor has found it not to be that effective.

I agree that more than the DEXA results are needed to assess osteoporosis. My endocrinologist ordered several lab tests, but I am not clear on how they may or may not line up with DEXA results. Those are some of the questions I have at my next appointment.

REPLY
1 reply
redhead1226 | @readhead1226 | May 18, 2022
In reply to @conniedunfield "Hi, I'm Connie, 74 yrs. old & have severe Osteoporosis. Fosamax wasn't working well enough and..." + (show)
@conniedunfield

Hi, I'm Connie, 74 yrs. old & have severe Osteoporosis. Fosamax wasn't working well enough and was suggested I go on Evenity for one year then they'll give me the IV reclast. Evenity has a big side effect of "Strokes" which is a huge concern. I have a healthy heart, so why do I want to risk my heart health? But do I want to risk falling and shattering a hip? So I've elected to try Evenity. I'm trying to be positive, but don't want to spend a year worrying about heart failure at some level. I'm glad I found this blog, other people's thoughts have eased my mind. Also, I'm having further conversations with my endocrinologist to see how they're going to monitor me throughout the year; a little hand holding will help....plus a lot of prayers. Thank you

Jump to this post

I just finished my 1 year Evenity treatment. No side effects and no heart issues. I also have a healthy heart. Osteoporosis needs treatment. Fractures are worse than any side effect you can have as far as my opinion is concerned. Im waiting on my DEXA scan and than Ill start on Prolia. Im here for support if you need it. I just had 2 sore arms for a day or so and no other effects to speak of. Ill post my new scan results here when I get them on June 24

REPLY
1 reply
callalloo | @callalloo | May 19, 2022
In reply to @lbmorgan44 "Thanks for the feedback on Evista. I have just begun research on the estrogen related drugs..." + (show)
@lbmorgan44

Thanks for the feedback on Evista. I have just begun research on the estrogen related drugs for osteoporosis. It is good to know your doctor has found it not to be that effective.

I agree that more than the DEXA results are needed to assess osteoporosis. My endocrinologist ordered several lab tests, but I am not clear on how they may or may not line up with DEXA results. Those are some of the questions I have at my next appointment.

Jump to this post

I'd like to know which tests he orders if you don't mind sharing. There are newer blood tests on the horizon to give more accurate info about bone health that could provide data to supplement the DEXA stuff.

REPLY
1 reply
callalloo | @callalloo | May 19, 2022
In reply to @artscaping "Good evening Connie. I am in exactly the same place. I did two years of Tymlos..." + (show)
@artscaping

Good evening Connie. I am in exactly the same place. I did two years of Tymlos without any side effects and my scores went down to Osteopenia. And then I came to a curve in the road. I am highly allergic to bisphosphonates. When I first started I was given Boniva. Within a month, I had to stop it and turn to Tymlos. Now, the only option that is not bisphosphonate is Prolia.

The side effects have been disturbing. I have had dental specialists review my X-rays and everything is fine. And if I do need dental work in the future, I can stop Prolia for a few weeks, then go back to Prolia. At least that is their recommendation. My question is this. How do you stop for a few weeks when Prolia is a twice a year injection?

Still searching for answers and perhaps a new option. Let's hold hands with each other on this complicated journey. What is your major concern?

May you be safe, protected, and free from inner and outer harm.
Chris

Jump to this post

My impression is that there is no stopping Prolia for a few weeks. (And I could be wrong .) At least without immediately going on a relay drug to try to prevent the bone loss triggered by discontinuing Prolia. For what it's worth, my endocrinologist has patients who were put on Prolia elsewhere and want to get off of it, and he begins the relay drug while still in Prolia if the drug is a bisphosphonate to try to alleviate the issues from quitting Prolia. And he does not prescribe Prolia himself any more.

REPLY
2 replies
MilkHoney | @christinehwoo | May 19, 2022
In reply to @lbmorgan44 "I am currently on Evenity which is in the same drug group as Tymlos and Forteo...." + (show)
@lbmorgan44

I am currently on Evenity which is in the same drug group as Tymlos and Forteo. I have read that Evenity is approved for use after Forteo or Tymlos; however, once Evenity is administered, you cannot go on Tymlos or Forteo.

My Endocrinologist is recommending Prolia after I complete the one-year course of Evenity. Prolia blocks the resorption of bone and will help retain the bone that is created from the use of Evenity. Note that Prolia also slows the entire bone remodeling process. Clinical trials for Prolia are 3-4 years long and it "might" be safe up to 8 years according to Mayo Clinic. Since Prolia does not build bone, when it is stopped there is a more rapid breakdown of bone which increases the risk for spinal fractures. After reading the negative reports on Prolia I am reluctant to take it.

What about going back on Evenity/Tymlos/Forteo after Prolia? The book Mayo Clinic on Osteoporosis by Anne Kearns, M.D., Ph.D. on page 163 states that taking Evenity/Tymlos/Forteo after stopping Prolia can be associated with limited improvements in bone density or even bone loss. It seems to me that going ON Prolia has significant consequences. Then going OFF Prolia becomes a dead end, at least for me.

Going on Prolia, for me, will give me a few quality years IF I have no side effects. Since there is nothing I can take when I go off of it, and bone loss is a given when going off Prolia, why would I take it in the first place?

What are the next choices and consequences when Prolia is no longer an option and I cannot tolerate the bisphosphonates (Fosamax and Reclast type drugs) and Tymlos Forteo and Evenity are also not options?

I am researching estrogen and estrogen-related medications to treat osteoporosis. There is Raloxifene/Evista in a class of drugs called Selective Estrogen Receptor Modulators (SERMs). This medication is supposed to improve bone density and prevent spinal fractures. It is not as effective on hips and wrist fractures. A drug called Duavee is in a different classification of drugs and helps maintain bone density and reduces the risk of fractures. It is used primarily to prevent osteoporosis, but not treat it. The risks of hormone therapy are lower for younger women than for those age 60 or older. These two estrogen-related medications carry the risk of deep vein thrombosis (DVT), blood clots in lungs and strokes.

I have always been active, eaten a well-balanced diet and have been taking calcium, Vitamin D along with other supplements as I watched my DEXA scores drop. Osteoporosis has no cure and all categories of mediations to stop bone loss or build new bone present their own challenges and significant consequences and have a limited timeframes for usage.

What I am seeking is quality of life, not longevity. Choosing from narrowing treatment options is also choosing how my final years will be spent. All choices have significant consequences. Given that, I can only make the best decision for my situation. I have a few more months of research before the year-long treatment of Evenity is completed and a decision must be made for the next step.

I plan to continue to post any information I find that has been well researched and might be helpful for those of us trying to make difficult decisions about our health.

Jump to this post

I am curious about the statement, "once Evenity is administered, you cannot go on Tymlos or Forteo". Do you know the reason from what you have researched? Thank you for your help.

REPLY
2 replies
charliesmama | @charliesmama | May 19, 2022
In reply to @readhead1226 "I just finished my 1 year Evenity treatment. No side effects and no heart issues. I..." + (show)
@readhead1226

I just finished my 1 year Evenity treatment. No side effects and no heart issues. I also have a healthy heart. Osteoporosis needs treatment. Fractures are worse than any side effect you can have as far as my opinion is concerned. Im waiting on my DEXA scan and than Ill start on Prolia. Im here for support if you need it. I just had 2 sore arms for a day or so and no other effects to speak of. Ill post my new scan results here when I get them on June 24

Jump to this post

Thank you for your post. I have been on prolia for 11 years now and my bone scan has improved and feeling no real side effects that I am aware of. Would be very interested in your results after the year I of evenity. My endocrinologist recommended evenity for a year also, but I was concerned about the black box warning. I do not have a cardiac or stroke history but do have a blood clotting disorder, so I have been hesitant due to that.

REPLY
2 replies
lbmorgan44 | @lbmorgan44 | May 19, 2022
In reply to @christinehwoo "I am curious about the statement, "once Evenity is administered, you cannot go on Tymlos or..." + (show)
@christinehwoo

I am curious about the statement, "once Evenity is administered, you cannot go on Tymlos or Forteo". Do you know the reason from what you have researched? Thank you for your help.

Jump to this post

I have the same question. So far in my research I have not found out the reason that Tymlos or Forteo cannot be taken after a course of Evenity. If it do find out I will be certain to post it.

REPLY
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