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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@lauratys

Hi, My switch to Actonel from Fosomax after 11 months of Evenity seems to be going well. Fosomax made me very stiff and achy just like the Evenity but Actonel seems to be okay after two months. Just wanted to update. Hoping gains made with Evenity hold. Exercise has slowed a lot due to rotator cuff surgery but have been walking. Need to get back to more weight bearing overall.

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I appreciate the update. As you know I got a lot of joint pain in my hands with Evenity (stopped after 9 months) and with the Reclast followup. Anyway, I'm due to get another dosage of Reclast in February which I don't want to do. Actonel looks like it might be a possibility. It doesn't stay in the body so long. I seem to recall the half life is 30 days. Now if it just will not cause any gastrointestinal problems.
Good luck with the shoulder. I had shoulder surgery it does really get better it just seems to take so long.

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@ann707

I appreciate the update. As you know I got a lot of joint pain in my hands with Evenity (stopped after 9 months) and with the Reclast followup. Anyway, I'm due to get another dosage of Reclast in February which I don't want to do. Actonel looks like it might be a possibility. It doesn't stay in the body so long. I seem to recall the half life is 30 days. Now if it just will not cause any gastrointestinal problems.
Good luck with the shoulder. I had shoulder surgery it does really get better it just seems to take so long.

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Thank you for the encouragement about the shoulder! I was afraid to do Reclast as it is in your system for so long and the Evenity adverse effects made me so cautious! Hoping the Actonel continues to be user friendly! I have had not GI issues with it.

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@windyshores

Has anyone had a fast heart rate with Evenity?

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I had elevated blood pressure 150/101 4 days after an injection.

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@windyshores

Has anyone had a fast heart rate with Evenity?

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Yes I had increased BP and palpitations, that's why I had to stop. The minor side effects- headache, tiredness, pain at injection sites I could live with, but I got too worried when the heart issues happened. I never had any issues with my BP before taking Evenity.

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I have been on a number of OP meds over the years, including 2 years of Forteo, which did help. Then, I had started Prolia, (one injection), but stopped and had no OP treatment for about 2 years because of dental work.
I have had high cholesterol that seems to be creeping up with age but avoided statins because my total and HDL were pretty good( in 2022:Total-287, LDL-182, HDL-91.) Prior to starting Evenity my primary recommended statins. I did an appointment with a cardiology NP who thought it was a good idea but she wasn't insistent on it. I started Pravastatin and stopped after about 7-10 days because I felt horrible: more trouble sleeping, brain fog and horrible taste so that I couldn't enjoy food and drinks. Now, I just had new lab work prior to my 6th Evenity injection and my cholesterol has jumped (Total-352, LDL-233, HDL-102). I'm wondering if this jump is due to the Evenity, but I can't find any studies that specifically report increase cholesterol. There of course is the black box warning regarding increase risk of heart attack and stroke, and I assume they are related to high cholesterol, but I haven't found that specific side effect. Has anyone experience increased cholesterol on Evenity?

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@suga

I think it very interesting that many on Evenity complain of joint pain. After my 4th shots I went for a jog and felt fantastic. However, the next morning I had so much pain in one knee. I went to urgent care. I was referred to a physical therapist. Anyway, to get to the point, I came across an explanation of this in Dr. McCormick’s Great Bones. On page 557 under ‘Technically Speaking’ he explains that sclerostin is inhibited by Evenity. However, sclerostin is needed whenever cartilage is injured. Therefore it takes longer to heal. Anyway read it for yourself.
Just this past week I went to my doctor and requested a CTX and P1NP. I might as well have been speaking Chinese! It’s just awful that we have to do all the investigating and yet there is no help. I’m seriously thinking of contacting Dr. McCormick but it seems he wants a lot of background information. Can anyone who has communicated with him tell me how the visit via phone or zoom went? Is it better to see him in person?
Thank all of you for the insight you present. I am in eastern Massachusetts. I asked my doctor (actually a nurse practitioner) about getting a TBS and that was another Chinese word for her. Is it easy to get one?

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Help! what do those initials stand for?

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@suga

I think it very interesting that many on Evenity complain of joint pain. After my 4th shots I went for a jog and felt fantastic. However, the next morning I had so much pain in one knee. I went to urgent care. I was referred to a physical therapist. Anyway, to get to the point, I came across an explanation of this in Dr. McCormick’s Great Bones. On page 557 under ‘Technically Speaking’ he explains that sclerostin is inhibited by Evenity. However, sclerostin is needed whenever cartilage is injured. Therefore it takes longer to heal. Anyway read it for yourself.
Just this past week I went to my doctor and requested a CTX and P1NP. I might as well have been speaking Chinese! It’s just awful that we have to do all the investigating and yet there is no help. I’m seriously thinking of contacting Dr. McCormick but it seems he wants a lot of background information. Can anyone who has communicated with him tell me how the visit via phone or zoom went? Is it better to see him in person?
Thank all of you for the insight you present. I am in eastern Massachusetts. I asked my doctor (actually a nurse practitioner) about getting a TBS and that was another Chinese word for her. Is it easy to get one?

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@suga I am also in eastern MA. I went in person in 2019 and again in 2023 and otherwise talk to McCormick by phone.

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Interesting. I have been on Evenity for 7 months. My cholesterol went up also and they have me on Rosuvastatin. I’m not taking it every day. Doctor says even 2 week will help. I hate all these meds. I had to take risks of Evenity. I have broken both feet June and July!! Still don’t know why my cholesterol is high.
We do our best.

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@susanfalcon52

I’m currently on Tymlos - no problems with that. Was on Forteo a few years ago and that went well, too. The Forteo did improve my bone density.
When I finish the Tymlos next month, I’m going on Evenity.
I have been worrying about the side effects, but this site has made me feel better.
I will post again after my first injection. Wish me luck!

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May I ask what did you take after forteo before tymlos?

Will you take anything after tymlos before you take evenity?

If possible, could you share before and after treatment dexa scores and/or tbs please?

Thank you very much and best of luck!

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@gpowr23

Help! what do those initials stand for?

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I had a one hour phone consultation and half hour follow up with Dr McCormick recently on the phone. I would have preferred in person, but I live in Canada, so it wasn’t convenient. It went very well. I appreciated his insight and suggestions. He requires a brief medical history, three past Dexa scans (full report with pictures), plus a copy of your most recent bloodwork.

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