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.

windyshores | @windyshores | May 20, 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

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Hi Chris. You sound like me with those reactions to multiple things. I have also ended up in the ER. Glad you can see the bright side: avoiding the kitchen!

I have read and been told by my doctor that Benadryl and tylenol can be taken before a Reclast infusion, along with hydration and a slower infusion. I have heard the same for Prolia (my doc doesn't want me on Prolia so his comments were only about Reclast). I would also add Pepcid, myself.

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1 reply
geedle12 | @geedle12 | May 20, 2022

Looking to connect with others diagnosed with autoimmune hepatitis

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heusty | @heusty | May 20, 2022
In reply to @callalloo "My impression is that there is no stopping Prolia for a few weeks. (And I could..." + (show)
@callalloo

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.

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I did delay Prolia for 3 weeks, and ended up with 3 compound fractures of my spine, from just getting out of bed. So just be very cautious if you delay a shot.

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conniedunfield | @conniedunfield | May 21, 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

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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.

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callalloo | @callalloo | May 22, 2022
In reply to @heusty "I did delay Prolia for 3 weeks, and ended up with 3 compound fractures of my..." + (show)
@heusty

I did delay Prolia for 3 weeks, and ended up with 3 compound fractures of my spine, from just getting out of bed. So just be very cautious if you delay a shot.

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That is not uncommon. I hope people understand that there is NO safe vacation from Prolia. There is no 'going off of Prolia' without the bone-shedding loss triggered by having 'gained' from being on it in the first place unless one immediately takes a different osteoporosis drug. Amgen, the manufacturer of Prolia, refers to the second, segue drug as a "relay" drug. My endocrinologist starts people, who are going to stop taking Prolia on the relay drug before they quit Prolia to try to establish a kind of safety net.

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Mentor
Chris Trout, Volunteer Mentor | @artscaping | May 22, 2022
In reply to @windyshores "Hi Chris. You sound like me with those reactions to multiple things. I have also ended..." + (show)
@windyshores

Hi Chris. You sound like me with those reactions to multiple things. I have also ended up in the ER. Glad you can see the bright side: avoiding the kitchen!

I have read and been told by my doctor that Benadryl and tylenol can be taken before a Reclast infusion, along with hydration and a slower infusion. I have heard the same for Prolia (my doc doesn't want me on Prolia so his comments were only about Reclast). I would also add Pepcid, myself.

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Hey there....thanks for the Benedryl and Tylenol mention. Do I take them several hours before the infusion? And how do I slow down the infusion? I have never used Pepcid. Why do you think it will be helpful with the jaw pain that seems to appear only when the Barometric Pressure is too low?
Thanks so much.
Chris

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1 reply
windyshores | @windyshores | May 23, 2022
In reply to @artscaping "Hey there....thanks for the Benedryl and Tylenol mention. Do I take them several hours before the..." + (show)
@artscaping

Hey there....thanks for the Benedryl and Tylenol mention. Do I take them several hours before the infusion? And how do I slow down the infusion? I have never used Pepcid. Why do you think it will be helpful with the jaw pain that seems to appear only when the Barometric Pressure is too low?
Thanks so much.
Chris

Jump to this post

Hi Chris, sorry if I was unclear. My docs suggest Pepcid as well as Benadryl because Pepcid is also an antihistamine, though we all use it to combat GI acid and GERD.

I believe you can ask to have the infusion slower. But I don't know if your doc has to prescribe it that way or if you just ask the nurse who administers it.

Barometric pressure is a major trigger for a lot of people. I am sorry about your jaw pain! Weather changes in general are a problem for many. My daughter has been in San Diego for the last few years and I feel so well with the steady temperatures there, that I consider moving there!

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1 reply
Mentor
Chris Trout, Volunteer Mentor | @artscaping | May 29, 2022
In reply to @windyshores "Hi Chris, sorry if I was unclear. My docs suggest Pepcid as well as Benadryl because..." + (show)
@windyshores

Hi Chris, sorry if I was unclear. My docs suggest Pepcid as well as Benadryl because Pepcid is also an antihistamine, though we all use it to combat GI acid and GERD.

I believe you can ask to have the infusion slower. But I don't know if your doc has to prescribe it that way or if you just ask the nurse who administers it.

Barometric pressure is a major trigger for a lot of people. I am sorry about your jaw pain! Weather changes in general are a problem for many. My daughter has been in San Diego for the last few years and I feel so well with the steady temperatures there, that I consider moving there!

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Thanks, @windyshores. You may be right. I lived in San Diego for 15 years and recently moved to MN. I think that with winter and especially summer storms, I am exposed to barometric pressure issues much more than in southern CA. Hmmmmm........good things to consider.

May you have happiness and the causes of happiness.
Chris

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2121 | @leslie2121 | Jun 10, 2022
In reply to @colleenyoung "Thanks @arlene7 for giving this overview of your experience. I also want to link to the..." + (show)
@colleenyoung

Thanks @arlene7 for giving this overview of your experience. I also want to link to the "companion" discussion here:
- Anyone taken Evenity (romosozumab) for Osteoporosis? https://connect.mayoclinic.org/discussion/evenity-osteoporosis/

I'd appreciate your returning to this discussion to provide an update as you continue to receive injections of the next year. Did you ultimately get approval from your insurance to cover this drug?

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Hello:
I discovered I have osteoporosis, and began treatment after having a compression fracture from skiing - something that normally would not have caused a fracture - in T 12. Very painful, but I recovered on my own without treatment. I was motivated to treat my osteoporosis after that!
I started Evenity injections in February, 2022. They are given in fatty part of upper arm, your abdomen or thighs. I try to rotate where they are given.
I usually have some soreness and redness for a day or so - sometimes not much, other times more.
I have no history of stroke or heart attack so hoping I don't have any problems with that.
I wonder if the risk returns to previous level once I complete the 12 monthly injections?
I will have a dexa-scan at some point to see my results and to determine whether I start prolia or reclast as a maintenance therapy. I am generally healthy and exercise regularly - so this was a surprise for me.

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maryannp55 | @maryannp55 | Jun 10, 2022

I shatterd my wrist in late 2019 at age 64, so surgery and metal plates. No discussion of bone mass, then came Covid so no chance to update scans until January 2022. Now my lumbar spine is above 4 so my new rheumatologist is aghast! She prescribed Evenity but I cannot get through the insurance gauntlet. She also mentioned Forteo but that may be my next attempt at getting some treatment.
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