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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@windyshores

I am impressed by your doctor! Insurance policies prevent people from doing bone-growing drugs first, and they are more effective without previous bisphosphonates or Prolia, apparently. If only all doctors were as proactive as yours, perhaps insurance policies would change.

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Interesting about the effectiveness not being as good with Evenity if you have taken a bisphosphonate prior. Do you know what factors into this?

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@sus34

Interesting about the effectiveness not being as good with Evenity if you have taken a bisphosphonate prior. Do you know what factors into this?

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I can only speculate so ask your doc. I would speculate that anti-resorptives don't build bone but slow turnover, so quality of bone might be affected (but probably only over more than 5 years). Evenity's site says it is most effective for "treatment naive" patients so that also refers to the fact that after Tymlos or Forteo, there might not be as much progress to make. Plenty of people take Evenity, or Foreo or Tymlos, after biphosophonates or Prolia and do very well, so the difference may be relative and small. I just think that insurance companies needs to change their policies so that we can grow bone then maintain, rather than requiring anti-resorptives first. But for those whose osteopororis is not severe, I would think biphosphonates would be enough to maintain health. Again, discuss with MD and insurance!

ps while Evenity grows bone, it also has anti-resorptive qualities, though to a lesser degree than Prolia or biphosphonates...Forteo and Tymlos do not have antiresorptive qualities so turnover continues...

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@sus34

Interesting about the effectiveness not being as good with Evenity if you have taken a bisphosphonate prior. Do you know what factors into this?

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@windyshores, @sus34
What this may suggest, given the various drugs available, and which work best when, do people need to kind of plan a likely sequence for a long-term treatment strategy? I thought I'd read somewhere that one of the newer drugs is actually precluded for people who'd taken bisphosphonates but I could easily be disremembering.

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@mikko

Thank you so much for the article about choosing a doctor. I have severe osteoporosis and was referred to an endocrinologist who recommended Evenity. I’ve had three set of injections and am experiencing bruising and lumps at injection sites, joint pain/aches, fatigue, headaches, dizziness and occasional shortness of breath. Unfortunately the response from my endocrinologist and his staff when I’ve communicated these issues is that they’ve never heard this before, which totally invalidates what I’m going through. While I wish you weren’t experiencing some of these same issues, you have made me feel like I’m not alone nor am I imagining what I’m feeling. After reading the article you referenced, I’m going to explore meeting with a rheumatologist. I believe this may be a better direction for me. Will update as I move forward.

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Hi Mikko, I'm sorry I've taken so long to respond. I received my 10th set of injections on Tuesday the 29th. Even though my rheumy/Endo have me a few weeks off, I was met with the same kind of dismissal of my side effects. Since I have Crohn's Disease, doctor's love to put anything and everything under that umbrella. I know how my Crohn's acts (I've had it for 42+ years) and it's not these symptoms at all. I'm really sad to hear that you are experiencing the same things! This drug is new and if the docs don't listen to us , they get to tell other patients that they haven't seen anyone having side effects. That's wrong. The few weeks off helped me, but my headaches and insomnia are already starting to get bad again. I'm going to try to finish the last two (depending on how I do with this last set) because my osteoporosis is severe. If I can't do it though, I can't do it. You know your body and can stop the treatment if needed. You're not alone!! I'll post another update soon. I hope you feel better and can get through the treatment! Hugs!

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@windyshores

@gina4bella can you switch to Tymlos? Good luck if you continue with Evenity. I am sure that the months you have already done have been helpful. Are you getting a DEXA only after the full year?

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Hi Wendy, Thank you, I need all the luck I can get! I just had my 10th set on Tuesday and crossing my fingers that the side effects don't get too horrible again. My doctor said he didn't think it was the Evenity, but I know that it is. I haven't heard of Tymlos, but I'll look into it. I'll know if I can continue the Evenity soon. As far as I know, I'll get a DEXA scan after the year of treatment is done. Hoping for great results, especially because it's been so difficult. Are you on Evenity and how far into your treatment are you? Good luck to you!!

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@gina4bella

Hi Wendy, Thank you, I need all the luck I can get! I just had my 10th set on Tuesday and crossing my fingers that the side effects don't get too horrible again. My doctor said he didn't think it was the Evenity, but I know that it is. I haven't heard of Tymlos, but I'll look into it. I'll know if I can continue the Evenity soon. As far as I know, I'll get a DEXA scan after the year of treatment is done. Hoping for great results, especially because it's been so difficult. Are you on Evenity and how far into your treatment are you? Good luck to you!!

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I am on Tymlos and do daily injections. I do it in the morning so I can rest while side effects are present for an hour or two. If Tymlos doesn't do enough I might try Evenity. I am grateful for those who post about side effects because many say they don't have any, and it is good to have a balanced view. I have done 6 months. DEXA in the fall after one year done. I still do only 7 clicks of the pen out of a possible 8.

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@callalloo

@windyshores, @sus34
What this may suggest, given the various drugs available, and which work best when, do people need to kind of plan a likely sequence for a long-term treatment strategy? I thought I'd read somewhere that one of the newer drugs is actually precluded for people who'd taken bisphosphonates but I could easily be disremembering.

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Good info with both posts…thanks! The only newer drug I am aware of is Evenity..are there others?

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I have a question about getting Covid booster vaccine while on Evenity. I just got the booster yesterday and every bone, joint, and muscle hurts severely. Plus headache. This is worse than previous covid shot before Evenity.

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Hi Haroula, I am sorry to hear that you are in pain. I have asked my doctor about this and she said that I should have the Covid booster at least 10 days after Evenity. Best wishes

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@haroula

I have a question about getting Covid booster vaccine while on Evenity. I just got the booster yesterday and every bone, joint, and muscle hurts severely. Plus headache. This is worse than previous covid shot before Evenity.

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Sorry you're hurting after the booster. Last year, when I was on Tymlos, I experienced severe bone/joint pain, mostly in my legs after I received the booster. I tried not to take anything, but finally took the least amount of Tylenol possible. It took the edge off the pain so it was tolerable. (Nurse said NOT to take Advil, Aleve, and such). Pain went away after 2 days. Hope this helps.

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