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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@dgm123s Exactly! I, too, can't see giving myself a shot everyday. I think my next step in the Evenity decision is to make very sure I have no cardiac issues. I'm in the process of getting a second opinion too. In my area most good doctors are booked out into July!

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Thanks for your comments. As I said in my original post I'm waiting to get into Mayo which does not seem easy to do. And have a meeting of the minds between the neurologist cardiologist and endocrinologist because it gets really confusing after a while and you don't know what to do.

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I respect anyone's discomfort with self-administration of shots. I have a kid with type 1 diabetes and was used to needles. Tymlos doesn't hurt at all and it has become like brushing my teeth, but I get the nervousness.

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I chose to take Tymlos (Evinity wasn't available yet) and was really bothered that I had to give myself shots of Tymlos to begin with. I had to do a lot of self-talk to get me through the first few months. It did become more routine though. I gave myself the shot right before I went to bed for the night, and I found if I had taken a nice, hot bath, then the shot often went into the pinched fat area of my tummy way easier - barely felt a pinch. But, admittedly, there were occasional nights that were less pleasent - more like that shot you don't like getting. Also, for me, for the first 1 1/2 hours after the shot, my heart raced, had a slight headache, and felt malaise. There were a few nights that that the symptoms were worse and lasted a few hours. After about 4 months of shots, my body seemed to get used to the medication. Through it all, I thanked God for medication available to me that would "grow" bone back, and slow the progression of osteoporosis. Now, at the end of taking Tymlos, I feel it was worth it. My t-scores all improved, especially in my spine. Hope this helps anyone who decides to take Tymlos.

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I am on my 6th shot next week for Evenity. I feel after I get my double shots (one in each arm) my immune system drops. I also have celiac and hypothyroidism. And my alkaline phosphatatase has really elevated. Other than sore arms after the first two shots I am ok

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@marianne1358

I am on my 6th shot next week for Evenity. I feel after I get my double shots (one in each arm) my immune system drops. I also have celiac and hypothyroidism. And my alkaline phosphatatase has really elevated. Other than sore arms after the first two shots I am ok

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Hi @marianne1358 everything is pointing in this direction for me although not decided yet. Sore arms I can deal with...it's all of the other side effects I'm reading about. Best to you!

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@giannam

Hi @marianne1358 everything is pointing in this direction for me although not decided yet. Sore arms I can deal with...it's all of the other side effects I'm reading about. Best to you!

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Thank you Giannam. Please keep me posted on which course you go. I have to continue with something after my completed year. Good luck to you:)

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I have a question. Who do you think is better to treat osteoporosis and endocrinologist or rheumatologist?

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I posted back in September 2021 after getting my #5 round of injections and that I had only headaches, fatigue and rib cage pain at that point. Those symptoms were not palpable enough for me to stop my treatment with Evenity. Fast forward to last month and what was supposed to be my 10th round of injections, that with my doctor's approval, I postponed. After month 5, my symptoms of side affects became so much worse: headaches, fatigue, rib cage pain and adding in: anxiety, mood swings, shortness of breath, heavy chest and dizziness. My skipped injections (#10) are set for March 30th. Although my symptoms are not resolved, they are not quite as severe now. To be safe, I got my PCP to order a chest x-ray for me. I'll check back in and give an update. Is anyone else having similar or even their own set of side affects as well? I'm hoping to be able to continue with the last 3 injections, as my osteoporosis is severe.

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@dgm123s

I have a question. Who do you think is better to treat osteoporosis and endocrinologist or rheumatologist?

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Do you have a Rheumatology/Endocrinology practice in your area? My rheumatologist specializes in both disciplines and is treating my osteoporosis. If not, I think both rheumatologists and endocrinologists are equally versed in osteoporosis. Here is a good article that could help you decide. Good luck! https://www.bones.nih.gov/health-info/bone/osteoporosis/find-doctor

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