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.

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@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 Gina,
I'm 46 years old and have similar T-scores (-4.3). I'm quite nervous about Evenity. I was trying to search to see a follow-up to your final treatments. I saw that you were having severe side effects and took a short break between 9th and 10th doses but I couldn't find any update afterward. Would you be able to share the final results and improvement in T-scores?

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@auntievintage

Hi Gina,
I'm 46 years old and have similar T-scores (-4.3). I'm quite nervous about Evenity. I was trying to search to see a follow-up to your final treatments. I saw that you were having severe side effects and took a short break between 9th and 10th doses but I couldn't find any update afterward. Would you be able to share the final results and improvement in T-scores?

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@autievintage many people do really well with Evenity without side effects. I don't want anything that I post to affect anyone else because I react to flavored seltzer!! Docs generally follow-up with Reclast or Fosamax, and sometimes Prolia. There really aren't any other choices.

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Thank you for the quick and thoughtful reply. At my age, I don’t see any other options but to try Evenity.

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@auntievintage

Thank you for the quick and thoughtful reply. At my age, I don’t see any other options but to try Evenity.

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auntievintage,
I have been on Evenity for 8 months. I’ll receive 9th injections next week. I haven’t had any side effects other than fatigue after first injections.
I felt that I had to try Evenity. My mother had a compression fracture which made her life difficult. I do not want that.
I have a dexa in May and then go on Reclast.

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@auntievintage

Hi Gina,
I'm 46 years old and have similar T-scores (-4.3). I'm quite nervous about Evenity. I was trying to search to see a follow-up to your final treatments. I saw that you were having severe side effects and took a short break between 9th and 10th doses but I couldn't find any update afterward. Would you be able to share the final results and improvement in T-scores?

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I am also in the same range of you guys with my T score in my spine of -4.6 and my femur not so bad at -2.1. I have been on Evenity for over 6 months now and tolerated side effects.

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@susanfalcon52

auntievintage,
I have been on Evenity for 8 months. I’ll receive 9th injections next week. I haven’t had any side effects other than fatigue after first injections.
I felt that I had to try Evenity. My mother had a compression fracture which made her life difficult. I do not want that.
I have a dexa in May and then go on Reclast.

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I have had 11 of my 12 monthly Evenity injections without any adverse effects. Next I will start Prolia in July. I will have a DEXA test in a few months to see if there has been any improvement. I fell and fractured my femur in 3 places and also my right wrist. A year later, I bent over to pick up groceries and fractured my T12 lumbar vertebrae. That is when I decided to stop be afraid of possible adverse effects of Evenity and Prolia. But I do not want to take Fosamax because I have read too many negative effects.

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After my first infusion of Evenity I had an outbreak of herpes simplex on my lips and face. After taking valtrex the outbreak stopped. I have had these type blisters in the past, but never like this. I am interested in others who have had this reaction? Ths/

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@marianne1358

So I will be receiving my 5th Evenity shot next week. My only change has been my blood work. Since being on Evenity I had my Comprehensive Metabolic Panel done. It shows, only since being on Evenity, that my Alkaline Phosphatase, S has been elevated. It is a high 192. Has anyone had any labs done? If so, has anyone seen any elevation on their Alkaline Phosphatase S while being on Evenity?

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I started Evenity in October 2023. My alkaline phosphate is 139. I may have to switch or stop my treatment altogether.

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@myrnoll

I started Evenity in October 2023. My alkaline phosphate is 139. I may have to switch or stop my treatment altogether.

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Hi @myrnoll and @marianne1358 I have been on forteo, an anabolic for more than a year. It was clear that my serum Alkaline phosphatase (ALP) was increased to 130-150, from a baseline of 75-90 right after the start of forteo. My endo said its normal. I read that an increased level of ALP usually is due to some problems of liver or bone. Since bone specific ALP increases with the use of an anabolic, we would expect total serum ALP to increase also?

@myrnoll, did your doctor think it's a good idea to stop evenity because of the increased level of serum total ALP?

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I have had two doses of Evinity so far and have been experiencing fatigue, depression, brain fog. I am also going down on my Cytomel (this was prescribed many years ago for depression, and I want to get off of it for my bone health.) I realize some of my side effects could be from the cytomel reduction but I seem to have adjusted to that. I also have significant pain on the left side of my neck. Has anyone had any of these side effects any input would be helpful thank you!

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