Anyone taken Evenity (romosozumab) for Osteoporosis?

Posted by arlene7 @arlene7, May 27, 2020

Has anyone taken Evenity? I understand it’s only been on the market for a little over a year. I’m hoping it will help with my severe osteoporosis. Any information is helpful.

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

My T-scores:
-4.7 Lumbar Spine (L1-L4)
-3.4 Left femoral neck
-3.0 Left hip
Age: 56
Crohn's Disease dx'd at age 15 and treated with long term, high dose Prednisone for years.

I've had chronic spine fractures and a broken wrist. My broken wrist went undiagnosed (no matter how much I cried to my docs about it) for 5+ years. It's now a SNAC wrist. (Non Union Advanced Collapse) My bones are currently too fragile for surgery.

I received my 5th Evenity injections yesterday. I get them behind my upper arms and have swelling and pain for a couple of days. Using a hot heating pad on the injection sites when I get home seems to help a lot. This was suggested by my doctor.
The only other side affects that seem to be from Evenity are, headaches, fatigue and rib cage pain.
The side affects are not enough for me to discontinue therapy. I am hopeful that Evenity will work for me and everyone else that's on it! Good luck everyone!

REPLY
@gina4bella

My T-scores:
-4.7 Lumbar Spine (L1-L4)
-3.4 Left femoral neck
-3.0 Left hip
Age: 56
Crohn's Disease dx'd at age 15 and treated with long term, high dose Prednisone for years.

I've had chronic spine fractures and a broken wrist. My broken wrist went undiagnosed (no matter how much I cried to my docs about it) for 5+ years. It's now a SNAC wrist. (Non Union Advanced Collapse) My bones are currently too fragile for surgery.

I received my 5th Evenity injections yesterday. I get them behind my upper arms and have swelling and pain for a couple of days. Using a hot heating pad on the injection sites when I get home seems to help a lot. This was suggested by my doctor.
The only other side affects that seem to be from Evenity are, headaches, fatigue and rib cage pain.
The side affects are not enough for me to discontinue therapy. I am hopeful that Evenity will work for me and everyone else that's on it! Good luck everyone!

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Hi Gina4Bella,

Thank-you for your reply. I hope the Evenity treatments work for you.

Good Luck!
TinaR

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@tinar

Hi Gina4Bella,

Thank-you for your reply. I hope the Evenity treatments work for you.

Good Luck!
TinaR

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Thank you TinaR!

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I just found this forum and have a question. One of the posts mentioned that Evenity has sulfa in it. I am very allergic to sulfa and my doctor knows that but has recommended Evenity for my osteoporosis. I haven’t decided to take it yet but now I’m concerned. Does anyone know anything about this? There is no mention of this on the Evenity website.

REPLY
@carols42

I just found this forum and have a question. One of the posts mentioned that Evenity has sulfa in it. I am very allergic to sulfa and my doctor knows that but has recommended Evenity for my osteoporosis. I haven’t decided to take it yet but now I’m concerned. Does anyone know anything about this? There is no mention of this on the Evenity website.

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Good evening @carols42 and welcome to Connect. I see this is your first post and it is a good one. Welcome. Is your doctor also your primary care provider? I, too, am very allergic to sulfa. The last doctor who didn't understand the impact that sulfa has on me also ignored the chart and I ended up in the ER trying to recover from the itching. I was rolling on the carpet trying to control what was happening to my body.

I think you can actually call Amgen and talk to a medical professional about your situation. The number is 800 772-6436. They might have a recommendation that you can give your doctor. Please report back. I too would like to know what they tell you.

May you be content and at ease.
Chris

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@carols42

I just found this forum and have a question. One of the posts mentioned that Evenity has sulfa in it. I am very allergic to sulfa and my doctor knows that but has recommended Evenity for my osteoporosis. I haven’t decided to take it yet but now I’m concerned. Does anyone know anything about this? There is no mention of this on the Evenity website.

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What are the ingredients in EVENITY?
Active ingredient: romosozumab-aqqg
Inactive ingredients: acetate, calcium, polysorbate 20, sodium hydroxide, sucrose and water for injection.

Hi Carols42, I found the above information on the web site for Evenity.

Tina R

REPLY
@artscaping

Good evening @carols42 and welcome to Connect. I see this is your first post and it is a good one. Welcome. Is your doctor also your primary care provider? I, too, am very allergic to sulfa. The last doctor who didn't understand the impact that sulfa has on me also ignored the chart and I ended up in the ER trying to recover from the itching. I was rolling on the carpet trying to control what was happening to my body.

I think you can actually call Amgen and talk to a medical professional about your situation. The number is 800 772-6436. They might have a recommendation that you can give your doctor. Please report back. I too would like to know what they tell you.

May you be content and at ease.
Chris

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I am very interested in the response from the company as well.

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@sus34

I am very interested in the response from the company as well.

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I am interested in their response as well

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I am sensitive to polysorbate, which is related to polyethylene glycol.

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In response to your questions:
/
What are your age and t-scores?
.Age 72, T-scores were lower (worse) than yours but I don't have the information at hand.

Did you see a dentist before starting?
Yes, and after 4th injection. Will see again after10th injection.
.
Did you see a cardiologist before starting?
Yes, he advised that for me the Evenity would not be a problem. (I have a leaky valve in my heart)
.
How often do you have blood tests done to evaluate calcium levels in the blood?
Do not do this.
.
What side-effects have you had?
None that I can discern.

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