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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I am taking Evenity for what has been identified as severe osteoporosis. I am grateful that I can take it and have not experienced any bad side effects after 3 sessions of the two shots. I generally feel pretty good when I can manage a decent night's sleep. Brain fog, at times, could be possible but not at all sure about a connection. What I am wondering about is whether anyone else has experienced significant night sweats and more frequent dreams with Evenity? I am 77, in pretty good health and try to exercise frequently. I am post menopausal, of course. I have regular hot flashes, so the night sweats could be from that condition, but the severity seems to have picked up and the lack of sleep is concerning. Also, as some have noted, cramps in feet and legs are also and issue with me so I appreciate the posts on that topic. If I'm not experiencing a hot flash, I'm cold, especially hands and feet. Thanks for reading this post; hope you're all doing well. I will appreciate any thoughts. Kolika

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@kolika

I am taking Evenity for what has been identified as severe osteoporosis. I am grateful that I can take it and have not experienced any bad side effects after 3 sessions of the two shots. I generally feel pretty good when I can manage a decent night's sleep. Brain fog, at times, could be possible but not at all sure about a connection. What I am wondering about is whether anyone else has experienced significant night sweats and more frequent dreams with Evenity? I am 77, in pretty good health and try to exercise frequently. I am post menopausal, of course. I have regular hot flashes, so the night sweats could be from that condition, but the severity seems to have picked up and the lack of sleep is concerning. Also, as some have noted, cramps in feet and legs are also and issue with me so I appreciate the posts on that topic. If I'm not experiencing a hot flash, I'm cold, especially hands and feet. Thanks for reading this post; hope you're all doing well. I will appreciate any thoughts. Kolika

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I also have had 3 doses of Evenity. My side effects are different ( like everyone on this site). I have a slight headache for about a week after the injections, tired and have puffiness in my upper eyelids that last for a couple of days. I live in South Florida so as far as being hot, especially at night is normal for me. I can't say I have more frequent dreams, but I do notice at times I have some brain fog. I am trying to think positive and hoping that this medication will be worth the worry and improve my bone density. I am sorry to hear about your experience with cramps and frequent dreams. I also take a low dose of Premarin so they might control any night sweats I could have.

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@pedsnurse61

I also have had 3 doses of Evenity. My side effects are different ( like everyone on this site). I have a slight headache for about a week after the injections, tired and have puffiness in my upper eyelids that last for a couple of days. I live in South Florida so as far as being hot, especially at night is normal for me. I can't say I have more frequent dreams, but I do notice at times I have some brain fog. I am trying to think positive and hoping that this medication will be worth the worry and improve my bone density. I am sorry to hear about your experience with cramps and frequent dreams. I also take a low dose of Premarin so they might control any night sweats I could have.

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Thank you so much for taking the time to share your experience. I live in AZ so being hot is also normal especially when the seasons are changing and it's not quite hot enough for the A/C to kick in overnight. Hoping this and the irregular bouts of insomnia (not new with Evenity) will pass. I'm so envious that you can take low dose Premarin to help with hot flashes. I took low dose estrogen patch and progesterone hormones for some time after menopause started. Subsequently, I developed endometrial cancer, had a complete hysterectomy, which thankfully took care of the cancer, and required no further treatment. Lucky and grateful! Have not been able to restart hormones except vaginal, but didn't help with hot flashes so I stopped it.
My Dexa scores in December were -5.2 spine, -5.1 femoral neck and -4.7 total hip. I realized it was time to stop worrying about the possible side effects, throw caution to the wind and trust my Endocrinologist. So far, so good.
I hope we both see significant improvement in our bones and any side effects will subside as we stay positive and soon approach the end of our treatment. Take care.

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I finally pinned down the person at the osteoporosis clinic and learned that the year of Evenity is followed by 3 years of Reclast and a 2 year holiday . A holiday sounds to me like the Reclast would then resume. I have not pushed my luck trying to get clarification on that.

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I seem to be doing well after having 10 injections of Evenity. My concern now is what to take after the 12 months and I need to take something else. Suggestions please.

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@solveigsp

I seem to be doing well after having 10 injections of Evenity. My concern now is what to take after the 12 months and I need to take something else. Suggestions please.

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I am seeing an endocrinologist and a rheumatologist both for osteoporosis treatment. They both said that when I finish the Tymlos - I only had 4 months of Tymlos - I go on Evenity. After that, they said 2 years on an oral med such as Boniva.

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@solveigsp

I seem to be doing well after having 10 injections of Evenity. My concern now is what to take after the 12 months and I need to take something else. Suggestions please.

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My MD said he is putting his patients on Prolia after the Evenity course. Every MD is different as to what they prescribe. You need to be pro-active in your choice. I have read on this site that many people are going to be taking Reclast. I have had some friends and family members also taking Reclast and some have had some terrible side effects, but others have had none. I have 9 months to decide what I will choose to take. I am glad your injections have been going well for you.

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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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Yes! I only had two and my Alk-Phos went up to 149!
Has yours gone down? Did you get off Evenity? What happened?

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@pedsnurse61

My MD said he is putting his patients on Prolia after the Evenity course. Every MD is different as to what they prescribe. You need to be pro-active in your choice. I have read on this site that many people are going to be taking Reclast. I have had some friends and family members also taking Reclast and some have had some terrible side effects, but others have had none. I have 9 months to decide what I will choose to take. I am glad your injections have been going well for you.

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@pedsnurse61 if you do Prolia you will eventually do Reclast or another bisphosphonate anyway because you cannot just stop Prolia without quickly losing what you gained.

In his new book "Great Bones," Dr, Keith McCormick explains that Reclast stays in the system much longer than Prolia, with a very long half life of 10 years, so you can safely take a break from meds once your gains have been "locked in."

You can do Prolia for a few years, but you also, according to the same book, have to be careful about the timing of the switch to Reclast from Prolia. If too soon, the Reclast won't work and if too late, the rebound effect of stopping Prolia could already kick in. He suggests doing CTX tests to determine timing.

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People keep talking about "locking in gains". How does Reclast do that? Does that mean coating the bones so they do not lose ground?

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