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.

micheleneual | @micheleneual | Jul 31, 2023
In reply to @candy209 "I am so sorry. Are you close to or can your doctor refer you to a..." + (show)
@candy209

I am so sorry. Are you close to or can your doctor refer you to a teaching hospital with oral surgeons. I had to do that over a jaw issue following an extraction and my medical insurance took over instead of my dental insurance.

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Yes, I have a referral to a teaching hospital and will be calling to check the insurance they take.
Thank you for the suggestion.

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1 reply
candy209 | @candy209 | Jul 31, 2023
In reply to @micheleneual "Yes, I have a referral to a teaching hospital and will be calling to check the..." + (show)
@micheleneual

Yes, I have a referral to a teaching hospital and will be calling to check the insurance they take.
Thank you for the suggestion.

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Best wishes to you. Sending you good thoughts and prayers.

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lab54 | @lab54 | Jul 31, 2023
In reply to @micheleneual "Hello, my rheumatologist started me on Evenity. After the 3rd month of the 2 injections I..." + (show)
@micheleneual

Hello, my rheumatologist started me on Evenity. After the 3rd month of the 2 injections I woke up and my lower jaw was out of place, I couldn’t open my mouth, it sounded like mush or sand in there. My doctor immediately took me off Evenity. He gave me an order to see a Maxillofacial surgeon. Every one of them only take dental insurance and I’m on Medicare. I’ve been told I have developed necrosis of the jaw. I’ve been giving up on finding a surgeon in my area, I don’t know what else to do.

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Michelle, I’m so sorry that happened to you. My thoughts & prayers are with you. My Rheumatologist told me that could be a possibility but put me Evenity because Prolia caused serious dental problems & she took me off it. Then she tried too put me on Forteo but I couldn’t afford the high cost. So after playing ring around the Rosie with drugs, I’m on Evenity. She did warn me that it could cause jaw issues like yourself. I just had my 1st 2 shots & waiting for the next one. I’m scared too death! I can no longer chew or eat well since Prolia & scared things will progress on Evenity. The doctors counsel you on how bad these drugs are but still put you in it. We are damned if we do, and damned if we don’t. I wish you the very best & hope things get better.

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1 reply
olderdiva12345 | @olderdiva12345 | Jul 31, 2023
In reply to @lab54 "Michelle, I’m so sorry that happened to you. My thoughts & prayers are with you. My..." + (show)
@lab54

Michelle, I’m so sorry that happened to you. My thoughts & prayers are with you. My Rheumatologist told me that could be a possibility but put me Evenity because Prolia caused serious dental problems & she took me off it. Then she tried too put me on Forteo but I couldn’t afford the high cost. So after playing ring around the Rosie with drugs, I’m on Evenity. She did warn me that it could cause jaw issues like yourself. I just had my 1st 2 shots & waiting for the next one. I’m scared too death! I can no longer chew or eat well since Prolia & scared things will progress on Evenity. The doctors counsel you on how bad these drugs are but still put you in it. We are damned if we do, and damned if we don’t. I wish you the very best & hope things get better.

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There is a way to get off of these shots. It is on this site somewhere. If I may, I would like to suggest that you search for the way to slowly wean yoursefl off of these horrid drugs. I too was told to take Prolia by my physician which I refused to do...to his face. Do they care? I am not sure.
Try not to be terrified. There is help out there even if it comes in the form of these forums and chat rooms.

Chin up. Put your big girl panties on and look for the solution and keep a smile on your face and in you voice and lean on your friends who have your back. I hope you have many people in your life on which you can depend.

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windyshores | @windyshores | Jul 31, 2023

According to my endo doc and Keith McCormick's book "Great Bones" Prolia should be followed with Reclast. If you did Prolia then Evenity (and there are no studies on that apparently) you will still need Reclast according to those sources. If not, then there will be bone loss and increase in fracture risk.

I posted on another thread the detailed instructions for transitioning from Prolia to Reclast, which has to be timed properly using CTX blood tests. Too early and it may not work, and too late, the bone loss may have already occurred. The CTX should be every 4-6 weeks and when it rises, that is when the previous drug has worn off and time to do Reclast, which can last two years according to some studies. Usually it is done annually.

There is no info on timing with Evenity but a transition to Reclast (or Prolia) is needed to avoid a drop in bone density and increase in fracture risk.

Reclast "locks in" gains and we may be able to take med breaks.

McCormick and my docs say that if you go from Prolia to Forteo or Tymlos, those drugs aren't effective. Evenity is too new so transition from Prolia to Evenity is not covered in the book's info.

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1 reply
sal462 | @sal462 | Jul 31, 2023
In reply to @ans "It’s me again, commenting now on PT’s, as an OT who has worked with, and has..." + (show)
@ans

It’s me again, commenting now on PT’s, as an OT who has worked with, and has been worked on by PT’s for a variety of issues over my life. I have come to understand first hand as you have, that probably most PT’s do not know the in’s and out’s of REALLY GOOD, SAFE, EFFECTIVE exercise s for osteopenia/osteoporosis.
Unless they have really taken an interest and dug deeper into the specifics or done extra teaching /training at conferences , they will probably be providing you with general weight bearing exercises, using weights on your hands , having you do machines in their office/gym. That is not good enough and as you’ve realized can sometimes be unsafe or detrimental.

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I am about to do exactly what you suggest. Thanks.

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sal462 | @sal462 | Jul 31, 2023
In reply to @micheleneual "Hello, my rheumatologist started me on Evenity. After the 3rd month of the 2 injections I..." + (show)
@micheleneual

Hello, my rheumatologist started me on Evenity. After the 3rd month of the 2 injections I woke up and my lower jaw was out of place, I couldn’t open my mouth, it sounded like mush or sand in there. My doctor immediately took me off Evenity. He gave me an order to see a Maxillofacial surgeon. Every one of them only take dental insurance and I’m on Medicare. I’ve been told I have developed necrosis of the jaw. I’ve been giving up on finding a surgeon in my area, I don’t know what else to do.

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That’s so awful. I wonder if you contact the manufacturer, Amgen, and told them the situation, they would be so worried about their image that they’d pick up the cost of your dental treatment.

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sal462 | @sal462 | Jul 31, 2023
In reply to @ans "It was me that mentioned Bone Coach and his team. I have not signed up for..." + (show)
@ans

It was me that mentioned Bone Coach and his team. I have not signed up for his program at this point, but I will tell you that he was a speaker at Margie Bissingers 2nd Symposium for “More Natural Approaches for Bone Health and Osteoporosis” , where for a week long she had on experts in the field. Because I participated in that program and learned sooo much and have done a lot of my own research as a result of that program is why I haven’t yet signed up. However, because I was a participant, Kevin Ellis , who is the Bone Coach has been sending me emails just about everyday since with good recipes and other tips on ideas to improve your situation. Yes, there’s always a little reminder at the end that he has a program to join, but you don’t have to.BUT all along the way I’ve learned from him for FREE!! He also has a presence on YouTube as I’ve seen him on with the PT that works on his team. She’s very good. I am an OT , Registered Occupational Therapist, and feel like I can say that. We have a similar background to PT’s, (muscle , neuro , exercise training as it relates to human conditions) and work closely with them. I have also personally reached out to him, Kevin Ellis, and have been impressed with his responses. I may do some of his program at some point , but because I’m invested in other programs at this point feel I don’t have the time and may be overlapping in reviewing same information I’ve already gathered. I will say though , he is an excellent teacher in his simple direct way of communicating concepts by using analogies any lay person can identify with. It’s fair to be skeptical, so do your own research. Good luck!!!

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Thanks so much for this. Yes I now get all those emails too. There’s something a little ‘pitchy’ about the whole thing, how they ask you what you want to spend in your ‘application,’ but the testimonials are impressive.

For now I am not making a decision either. I only found you guys on Mayo Clinic site a week or so ago, and even that has been really really informative.

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susanfalcon52 | @susanfalcon52 | Aug 1, 2023

Is necrosis a side effect of Evenity? I thought that it was not. Am I misinformed?
So sorry that this happened to you. 🙁

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1 reply
windyshores | @windyshores | Aug 1, 2023
In reply to @susanfalcon52 "Is necrosis a side effect of Evenity? I thought that it was not. Am I misinformed?..." + (show)
@susanfalcon52

Is necrosis a side effect of Evenity? I thought that it was not. Am I misinformed?
So sorry that this happened to you. 🙁

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@susanfalcon52 Evenity is both an anabolic bone builder and an anti-resorptive. My doc and Keith McCormick's book both told me that it is more anabolic in the first 6 months and then the anti-resorptive qualities are stronger in the last 6 months.

It comes with the same warning on osteonecrosis of the jaw and atypical femur fracture as Prolia and bisphosphonates but the risk is, I have been told, less with Evenity than the others. (My info is from the Evenity site as well as docs...)

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