← Return to My Experience on Evenity for Treating Osteoporosis

Discussion
Comment receiving replies
@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


Replies to "Good evening Connie. I am in exactly the same place. I did two years of Tymlos..."

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.

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.

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

Hi Chris,

I'm sorry to read you're allergic to bisphosphonates, which we seem to need for our Osteoporosis.

My main concern with Evenity: the drug side effect may raise the risk of heart attach, stroke etc. I do have a healthy heart, but do I want to subject it these risks? I have to choose, do I want the stress of worrying for the rest of my life falling and shattering my hip, or take a chance with this med. to improve my bones? I'm very active; walking, love to do a bit of traveling etc.

I selected Evinty, for the 1 yr. program & then the IV reclast. I start in June.

Thanks, I appreciate your kind comments of "hand holding", it's nice to know there's others of us having to make these tough decisions.