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.

lbmorgan44 | @lbmorgan44 | May 19, 2022
In reply to @charliesmama "Thank you for your post. I have been on prolia for 11 years now and my..." + (show)
@charliesmama

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.

Jump to this post

Eleven years and no side effects. That is great quality of life!

My last dose of Evenity is the first of October, but the doctor might be ordering tests in September. I will post the results as soon as I have them this coming fall.

REPLY
lbmorgan44 | @lbmorgan44 | May 19, 2022
In reply to @callalloo "I'd like to know which tests he orders if you don't mind sharing. There are newer..." + (show)
@callalloo

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.

Jump to this post

Here is the list of blood tests ordered by my endocrinologist:
Albumen
Calcium
Creatinine
O C Telopeptide CTX
O PTHI Without Calcium or Ionized Calcium
Phospate
Vitamin, D25 Hydroxy
Are there other tests that you are aware of that reflect bone health?

REPLY
1 reply
lbmorgan44 | @lbmorgan44 | 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

This is in response to your question. "How do you stop for a few weeks when Prolia is a twice a year injection?"

I have two questions. Does your dentist know that Prolia is an every 6 month injection? Is the dentist thinking that you postpone the next 6 month dose for two weeks or more?

I do not have an answer to your question, but here is some information that might be helpful:
o Prolia begins to work within 3 days of the injection.
o It has a peak concentration that ranges from 3 to 21 days
o The half-life of Prolia is 25.4 days. (That means that 50% of the medication is still active
25.4 days from the injection date)
o Prolia can stay in you body for up to 6 months from the time of injection

I have added information from an article from the Cleveland Clinic. You can read the full article at https://consultqd.clevelandclinic.org/rapid-bone-loss-and-multiple-vertebral-fractures-after-denosumab-cessation/

Here is a quote from the article:
"In phase 2 trials of denosumab, [Prolia] the gain in bone mass with two years of treatment was completely lost after one year off therapy."
" McClung et al.4 found that bone mineral density in the lumbar spine had increased 16.8% after eight years of denosumab [Prolia] therapy but declined 6.7% in the first year after stopping. Some have described the dramatic decline in bone mass as if bone were a “spring,” (i.e., when pressure is released, the material wants to rebound to the pretreatment state)."

While these studies show that bone mineral density is decreased after one year of being off Prolia, it does not indicate what happens at 1 to 6 months after going off Prolia if you need to stop the medication for dental work. I believe it is safe to assume that there will be some bone loss, how much is not indicated in this article.

Remaining Questions in my mind.
How much bone mineral density is lost if you postpone a Prolia injection for 2-4 weeks or longer but less than a year?
How high is the risk for osteonecrosis of the jaw (ONJ) if you postpone Prolia for 2-4 weeks or longer, but less than a year?
When is it safe to resume Prolia injections after dental surgery on the jaw bone?

Since the bisphosphonates are not an option for you, I hope dental work that involves the bone is not in your future.

Many Blessings

REPLY
1 reply
callalloo | @callalloo | May 19, 2022
In reply to @lbmorgan44 "Here is the list of blood tests ordered by my endocrinologist: Albumen Calcium Creatinine O C..." + (show)
@lbmorgan44

Here is the list of blood tests ordered by my endocrinologist:
Albumen
Calcium
Creatinine
O C Telopeptide CTX
O PTHI Without Calcium or Ionized Calcium
Phospate
Vitamin, D25 Hydroxy
Are there other tests that you are aware of that reflect bone health?

Jump to this post

Thanks. I've had most, but not all, of these and am keeping a list of tests I want done to discuss at next doctor's appointment.

I don't know of any that you haven't had done but will pass on any that I learn about. I know that studies are in progress to develop more data-rich blood work to help predict who might be of increased risk, or early development, of bone density loss when changes to diet can have a bigger impact.

REPLY
callalloo | @callalloo | May 19, 2022
In reply to @lbmorgan44 "This is in response to your question. "How do you stop for a few weeks when..." + (show)
@lbmorgan44

This is in response to your question. "How do you stop for a few weeks when Prolia is a twice a year injection?"

I have two questions. Does your dentist know that Prolia is an every 6 month injection? Is the dentist thinking that you postpone the next 6 month dose for two weeks or more?

I do not have an answer to your question, but here is some information that might be helpful:
o Prolia begins to work within 3 days of the injection.
o It has a peak concentration that ranges from 3 to 21 days
o The half-life of Prolia is 25.4 days. (That means that 50% of the medication is still active
25.4 days from the injection date)
o Prolia can stay in you body for up to 6 months from the time of injection

I have added information from an article from the Cleveland Clinic. You can read the full article at https://consultqd.clevelandclinic.org/rapid-bone-loss-and-multiple-vertebral-fractures-after-denosumab-cessation/

Here is a quote from the article:
"In phase 2 trials of denosumab, [Prolia] the gain in bone mass with two years of treatment was completely lost after one year off therapy."
" McClung et al.4 found that bone mineral density in the lumbar spine had increased 16.8% after eight years of denosumab [Prolia] therapy but declined 6.7% in the first year after stopping. Some have described the dramatic decline in bone mass as if bone were a “spring,” (i.e., when pressure is released, the material wants to rebound to the pretreatment state)."

While these studies show that bone mineral density is decreased after one year of being off Prolia, it does not indicate what happens at 1 to 6 months after going off Prolia if you need to stop the medication for dental work. I believe it is safe to assume that there will be some bone loss, how much is not indicated in this article.

Remaining Questions in my mind.
How much bone mineral density is lost if you postpone a Prolia injection for 2-4 weeks or longer but less than a year?
How high is the risk for osteonecrosis of the jaw (ONJ) if you postpone Prolia for 2-4 weeks or longer, but less than a year?
When is it safe to resume Prolia injections after dental surgery on the jaw bone?

Since the bisphosphonates are not an option for you, I hope dental work that involves the bone is not in your future.

Many Blessings

Jump to this post

I just want to add that the bisphosphonates were associated with osteonecrosis (dead bone) of the jaw before Prolia was. One can take a vacation from bisphosphonates without what my endocrinologist calls the 'Prolia take-back' or reversal of bone gain, but anyone taking them should pay special attention to any pain or unusual sensations around the jaw and report it to the prescribing physician in case a change of drugs is merited.

REPLY
redhead1226 | @readhead1226 | May 19, 2022
In reply to @charliesmama "Thank you for your post. I have been on prolia for 11 years now and my..." + (show)
@charliesmama

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.

Jump to this post

I was hesitant as well. But I had a fracture in my spine so I went for it. No side effect can be as bad as that fracture to me. I didnt have any side effects but 2 sore arms every month for a day or two. That was it. Now Im afraid of the Prolia! But Im going for it. Osteoporosis is no joke. As you know. Im going ahead with the treatments in hopes to get back to a somewhat normal life. A careful one, but as normal as I can. I say to myself every day... just do it - youre a bad ass!

REPLY
1 reply
charliesmama | @charliesmama | May 19, 2022
In reply to @readhead1226 "I was hesitant as well. But I had a fracture in my spine so I went..." + (show)
@readhead1226

I was hesitant as well. But I had a fracture in my spine so I went for it. No side effect can be as bad as that fracture to me. I didnt have any side effects but 2 sore arms every month for a day or two. That was it. Now Im afraid of the Prolia! But Im going for it. Osteoporosis is no joke. As you know. Im going ahead with the treatments in hopes to get back to a somewhat normal life. A careful one, but as normal as I can. I say to myself every day... just do it - youre a bad ass!

Jump to this post

Thank for saying that and your support! Wish you positive outcomes from the evenity!

REPLY
Mentor
Chris Trout, Volunteer Mentor | @artscaping | May 19, 2022
In reply to @windyshores "Chris are you allergic or sensitive? Are you sure it is the active medication? I ask..." + (show)
@windyshores

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.

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Good afternoon @windyshores. Thank you for responding. I do have a few allergies to "stuff". It began with general anesthesia at the age of 9. An emergency appendectomy put me in isolation for 10 days. Even my parents could only see me through a small window. Now, the anesthetists are very willing to work with me before surgery.

I developed Atopic Dermatitis and have to deal with fabrics, laundry soaps, cosmetics, and many household products. (My excuse for staying out of the kitchen!!). Then I had my most severe reaction to Polypropelene fumes ...... and other VOCs are off-limits. I end up in the ER.

Benadryl....I took that early on with the AD issues. How would it be helpful now with Prolia? Your time and attention are greatly appreciated.

May you have happiness and the causes of happiness.
Chris

REPLY
2 replies
Mentor
Chris Trout, Volunteer Mentor | @artscaping | May 19, 2022
In reply to @artscaping "Good afternoon @windyshores. Thank you for responding. I do have a few allergies to "stuff". It..." + (show)
@artscaping

Good afternoon @windyshores. Thank you for responding. I do have a few allergies to "stuff". It began with general anesthesia at the age of 9. An emergency appendectomy put me in isolation for 10 days. Even my parents could only see me through a small window. Now, the anesthetists are very willing to work with me before surgery.

I developed Atopic Dermatitis and have to deal with fabrics, laundry soaps, cosmetics, and many household products. (My excuse for staying out of the kitchen!!). Then I had my most severe reaction to Polypropelene fumes ...... and other VOCs are off-limits. I end up in the ER.

Benadryl....I took that early on with the AD issues. How would it be helpful now with Prolia? Your time and attention are greatly appreciated.

May you have happiness and the causes of happiness.
Chris

Jump to this post

And.....I have had Periodontic dentists review my dental X-rays. Everything looks good and they think I will probably not have trouble that requires dental surgery during my lifetime. They also think that my current issue is recession-related. That may be why the barometric pressure impacts my discomfort at the jawline.

All for now.
Chris

REPLY
windyshores | @windyshores | May 20, 2022
In reply to @lbmorgan44 "I have the same question. So far in my research I have not found out the..." + (show)
@lbmorgan44

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.

Jump to this post

I read that because Evenity "turbocharges" bone growth, there isn't much left for Tymlos or Forteo to accomplish. I have also read that Evenity works best for "treatment naive" people, meaning those who have not had any meds. However, I do know some are following Tymlos or Forteo with Evenity to get a little more bone growth.

REPLY
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