My Experience on Evenity

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.

Liked by lioness

@arlene7. Thank you so much for sharing your experience with Evenity. I noted the statement about "everything" has side effects. I think that is true and the challenge becomes to make sure Evenity or other bone medications don't have an interaction with our current drugs or treatments. I also have an allergy to sulfa drugs…..so you did have and now it is possible that you will not have an allergic reaction to sulfa. No more rolling on the carpet naked to take care of the itching. Now that I have the neuropathic itch, I don't need anything else.

Arlene, there is one question about Evenity, I think many of us would like to hear. How long do you take Evenity? 2 years? And then what? I always want to know what comes next to protect the bone that is developed.

You have my good wishes for a helpful outcome. Please check in with us as you begin this journey. You have persevered beautifully. Now all you have to do is share …….. not a bad deal.

Be safe and protected from inner and outer harm.
Chris

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Evenity is for 12 months only. Once the new scans are reviewed (after a year of taking Evenity) the maintenance plan will then be discussed with Endocronologist.
In regards to the sulfa allgery. I had an allergic reaction to an antibiotic about 40 years ago. The Hydrochlorothiazide is a bit different than an antibiotic, so it may be ok to take, however I want to make sure before taking, that is why I have chosen to see an allergist first.

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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?

Liked by lioness

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Yes, I finally received approval.

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I have been on Evenity for almost a year and just had a bone density test so not sure if it works. My insurance does pay for it though. I will follow up with the results of my test. I have lost almost 4 inches of height so I wish there was something that would help. I also have severe scoliosis which affects my balance. I need a new spine!!!

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@loiscapecod

I have been on Evenity for almost a year and just had a bone density test so not sure if it works. My insurance does pay for it though. I will follow up with the results of my test. I have lost almost 4 inches of height so I wish there was something that would help. I also have severe scoliosis which affects my balance. I need a new spine!!!

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Hoping that the test results show an improvement! Also you mentioned that you have lost 4 inches in height…is this after taking Evenity or just in a course of years? What other measures (exercise, supplements) are you doing?

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Hi!
I’m am in receipt of my first dose of Evenity. I am to start it on January 1. I’m very nervous but I do not have any history of stroke or heart attack and I am super healthy and workout with weights and cardio my whole life so I’m hopeful that I will be okay and have a positive outcome. Can you give us an update? You had no side effects?
Thanks so much and god bless,
Sarah

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@sarahw02

Hi!
I’m am in receipt of my first dose of Evenity. I am to start it on January 1. I’m very nervous but I do not have any history of stroke or heart attack and I am super healthy and workout with weights and cardio my whole life so I’m hopeful that I will be okay and have a positive outcome. Can you give us an update? You had no side effects?
Thanks so much and god bless,
Sarah

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I have had 6 months of injections and so far so good, with no side effects. I also met someone at the infusion center where I go, and she also has had no side effects and has taken almost a year. I have my next scan in May and am hoping that my numbers improve significantly, especially in my spine.
Not sure whether you are aware, the injections are in the back of each arm, so I would recommend wearing a short sleeved shirt so that it’s easier.
Good Luck and please keep us updated.

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@arlene7

I have had 6 months of injections and so far so good, with no side effects. I also met someone at the infusion center where I go, and she also has had no side effects and has taken almost a year. I have my next scan in May and am hoping that my numbers improve significantly, especially in my spine.
Not sure whether you are aware, the injections are in the back of each arm, so I would recommend wearing a short sleeved shirt so that it’s easier.
Good Luck and please keep us updated.

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Thank you so much! I started my treatment with Evenity today. Saying prayers for both of us for big gains and positive outcomes!

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Hi!
I received my first injections last night I’m my abdomen. One on each side. I have a tremendous amount of swelling and tenderness at the injection sites today. Is this normal? How long does it take to resolve?

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@sarahw02

Hi!
I received my first injections last night I’m my abdomen. One on each side. I have a tremendous amount of swelling and tenderness at the injection sites today. Is this normal? How long does it take to resolve?

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Hi there, My injections are given on the back side of each arm, and yes it is tender for about a day or so. It’s a bit swollen around the area where the medication is injected, which is completely normal. The medication ends up dispersing/absorbing into your body after a while. Please keep me posted, hoping tomorrow is a better day.

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@sarahw02

Hi!
I’m am in receipt of my first dose of Evenity. I am to start it on January 1. I’m very nervous but I do not have any history of stroke or heart attack and I am super healthy and workout with weights and cardio my whole life so I’m hopeful that I will be okay and have a positive outcome. Can you give us an update? You had no side effects?
Thanks so much and god bless,
Sarah

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@sarahw02 Welcome to Mayo Clinic Connect, a place to give and get support.

You started your first dose of Evenity on January 1st and you were nervous beforehand. You are looking to connect with others that have taken Evenity.

Below I have linked another previous discussion related where members like @nancyguy @contentandwell @arlene7 this topic. You may want to scroll through the posts and read suggestions.
– Anyone taken Evenity (romosozumab) for Osteoporosis? https://connect.mayoclinic.org/discussion/evenity-osteoporosis/

You said that you had swelling. May I ask if that resolved?

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@erikas

@sarahw02 Welcome to Mayo Clinic Connect, a place to give and get support.

You started your first dose of Evenity on January 1st and you were nervous beforehand. You are looking to connect with others that have taken Evenity.

Below I have linked another previous discussion related where members like @nancyguy @contentandwell @arlene7 this topic. You may want to scroll through the posts and read suggestions.
– Anyone taken Evenity (romosozumab) for Osteoporosis? https://connect.mayoclinic.org/discussion/evenity-osteoporosis/

You said that you had swelling. May I ask if that resolved?

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@erikas I have not yet been on any osteoporosis drugs but I expect to start on Tymlos within a few days.

@sarahw02 I hope your problems from Evinity will resolve quickly, I wish I could say something helpful.
JK

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@sarahw02

Hi!
I received my first injections last night I’m my abdomen. One on each side. I have a tremendous amount of swelling and tenderness at the injection sites today. Is this normal? How long does it take to resolve?

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Hi! Was wondering how you were doing. Did the swelling and tenderness get better?

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Hi! Yes thankfully after about 4 days the swelling and pain resolved. I’m hoping the next time my body will have less of a reaction.
Thx for checking in!

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