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’m 65 yr old diagnosed with osteopenia a year ago, otherwise healthy until I took Reclast. I’ve never had an adverse reaction to any medication so barely paid attention when the dr ran through the possible side effects. Once a year sounded perfect and is for many, however if you have a bad reaction, you can be dealing with it for a long time. Reclast triggered an autoimmune reaction and I’ve been on prednisone for a year, which of courses impairs bone density. I’m getting new scans in a couple of months and will probably need to find an alternative treatment but after this year, I will not do anything that creates such a powerful lode on my system.

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@heatrey

I’m 65 yr old diagnosed with osteopenia a year ago, otherwise healthy until I took Reclast. I’ve never had an adverse reaction to any medication so barely paid attention when the dr ran through the possible side effects. Once a year sounded perfect and is for many, however if you have a bad reaction, you can be dealing with it for a long time. Reclast triggered an autoimmune reaction and I’ve been on prednisone for a year, which of courses impairs bone density. I’m getting new scans in a couple of months and will probably need to find an alternative treatment but after this year, I will not do anything that creates such a powerful lode on my system.

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I'm so sorry to read that you've had this reaction. I'm wondering if medical science can invent sensitivity tests for these, and a lot of other, drugs? There has to be some way of gauging how a body will respond to a drug before putting a full dose into someone's body. Yet alone a yearsworth of anything that has no antidote.

I know that allergists can test for penicillin allergies but the test can take several hours. Maybe a similar technology can be used to test for sensitive to other meds and any other chemicals included in the injection solution. No one should have to take a lot of these risks.

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Very interesting idea! In the interim I’ll try to avoid anything that’s one and done.

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@nancyguy

I saw an endocrinologist who discussed Evenity with me. Possible side effects include stroke and heart attack. Originally, the FDA refused to approve this med. Finally, in April 2019, it was approved. I refused to take it although that doctor told me it was the only med I could take to strengthen bones (because I had radiation for cancer in the past). I am on Fosamax, which does not strengthen bones, but is supposed to prevent further thinning (which I doubt because of recent x-rays which showed a thinning of pelvic bone between June 2019 and Feb. 2020. So, you see, with severe osteoporosis, I am "between a rock and a hard place." Good luck to you with whatever you choose. God bless!
Nancy

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Thank you for your input, very helpful. I also received this recommendation to take Evenity as have serious osteoporosis. I have so far declined as afraid of heart and stroke issues. Not sure what I'll do, but have been told "something is better than nothing."
Comfortable with Actonel but may not be enough at this point.

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@kolika

Thank you for your input, very helpful. I also received this recommendation to take Evenity as have serious osteoporosis. I have so far declined as afraid of heart and stroke issues. Not sure what I'll do, but have been told "something is better than nothing."
Comfortable with Actonel but may not be enough at this point.

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The drug choices for osteoporosis leave a lot to be desired. If you've been an Actonel for a while and it's helping, that's good. But if it's not, there are a few other drugs that might. I think the key is to have a prescribing physician with an osteoporosis specialty and likely to be very current on all the choices.

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I am currently on Evenity and had my 4th injection. There are side effects, some serious. I was on Actonel for 10 years before the FDA said that's not a good idea because of brittle bones. The Actonel did not increase bone mass for me, but just stabilized my existing bone density. It takes research before deciding on a medication that's right for you. Endocrinologists and Rheumatologists specialize in bone health. Good luck in your journey.

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@me49

I am currently on Evenity and had my 4th injection. There are side effects, some serious. I was on Actonel for 10 years before the FDA said that's not a good idea because of brittle bones. The Actonel did not increase bone mass for me, but just stabilized my existing bone density. It takes research before deciding on a medication that's right for you. Endocrinologists and Rheumatologists specialize in bone health. Good luck in your journey.

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Thank you so much for your comments re Actonel. I took it for 8 years until a new doctor said I should have stopped at 5 years for a drug holiday. Discouraged, I never got back on anything and didn't have a DEXA as I wasn't ready for another drug. Obviously a big mistake! Other health issues took the focus off my bone health.
Now my bone density is seriously low: spine -5.2, femoral neck -4.4 and total hip -4.5, but luckily have yet to break a bone despite a few significant falls. Perhaps the Actonel did something but did not build bone. I have discussed my situation with my PCP, endocrinologists, and an endocrine surgeon (I have mild hyperparathyroidism). Surgeon offered surgery because of my bone condition but not sure it's worth the risk at age 76. I am grateful for the time and professional input of these doctors, but am frozen when it comes to making this decision as heart attack and stroke run in my family. I've had a cardiac ablation and am fortunate that it has normalized my heart function. I worry that introducing one of the anabolic drugs will upset that progress or introduce something worse. I know many of you have struggled with this decision and am grateful for your input. In the meantime I'll keep exercising and eating well and try to summon the courage to act.
Please share your "serious side effects," so I might assess if I can handle them. I'd especially like to know if dizziness and rapid heart beat are among the serious.
Thank you again.

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@kolika

Thank you so much for your comments re Actonel. I took it for 8 years until a new doctor said I should have stopped at 5 years for a drug holiday. Discouraged, I never got back on anything and didn't have a DEXA as I wasn't ready for another drug. Obviously a big mistake! Other health issues took the focus off my bone health.
Now my bone density is seriously low: spine -5.2, femoral neck -4.4 and total hip -4.5, but luckily have yet to break a bone despite a few significant falls. Perhaps the Actonel did something but did not build bone. I have discussed my situation with my PCP, endocrinologists, and an endocrine surgeon (I have mild hyperparathyroidism). Surgeon offered surgery because of my bone condition but not sure it's worth the risk at age 76. I am grateful for the time and professional input of these doctors, but am frozen when it comes to making this decision as heart attack and stroke run in my family. I've had a cardiac ablation and am fortunate that it has normalized my heart function. I worry that introducing one of the anabolic drugs will upset that progress or introduce something worse. I know many of you have struggled with this decision and am grateful for your input. In the meantime I'll keep exercising and eating well and try to summon the courage to act.
Please share your "serious side effects," so I might assess if I can handle them. I'd especially like to know if dizziness and rapid heart beat are among the serious.
Thank you again.

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One other variable that would be good to know is overall bone strength. If your doctor(s) are using some of the newer technology that looks beyond bone density at bone strength and bone health, there might be some reassuring data. And they can reconsider the best options for you personally.

The positive thing about knowing possible side effects is that the patient and doctor can be aware of any early indications if they're on the wrong path. I worry more about the side effects that aren't yet known about. The osteoporosis drugs get a lot of attention from women determined to make informed decisions and sharing what they learn so, to that extent, there are fewer surprises with these drugs than a lot of other drugs.

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@callalloo

One other variable that would be good to know is overall bone strength. If your doctor(s) are using some of the newer technology that looks beyond bone density at bone strength and bone health, there might be some reassuring data. And they can reconsider the best options for you personally.

The positive thing about knowing possible side effects is that the patient and doctor can be aware of any early indications if they're on the wrong path. I worry more about the side effects that aren't yet known about. The osteoporosis drugs get a lot of attention from women determined to make informed decisions and sharing what they learn so, to that extent, there are fewer surprises with these drugs than a lot of other drugs.

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Thank you so much for your reassuring reply, I deeply appreciate it. I will try to look into more definitive testing and also testing for drug reactions, which I believe is available.

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@contentandwell

@arlene7 Most doctors do prefer for you to get your calcium through foods. There is no way I do that though, I am lactose intolerant. I realize there is calcium in some vegetables but I would not get the 1200 mg a day suggested.
JK

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I drink almond milk. I buy the boxed ones that come unrefrigerated at Costco. 2 cups a day provides you with 90% of you calcium.

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