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 new to this group and am looking for support. I’m 65 years old and my spine T score is -3.2. No health issues except for osteoporosis and have not had any fractures. I had my third set of Evenity shots today. I get the shots in the back of my arms. After the first set of shots, I had bruising, a lump at each injection site and soreness that lasted a week. After the second set of shots I had less bruising but was still quite sore for a week after injection. After today’s set of shots, I am very sore, have lumps at each site and some discoloration at the injection sites. Last week I started experiencing aching in my joints. When I mentioned it to the nurse today she said she’d pass the info on to my endocrinologist. The response I received from the doc was that he hadn’t heard that from other patients and doubted it was from the Evenity injections. When I looked at the Evenity site, joint point/aches was listed as a common side affect. I’m feeling a lack of confidence in my endocrinologist.

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@mikko

I am new to this group and am looking for support. I’m 65 years old and my spine T score is -3.2. No health issues except for osteoporosis and have not had any fractures. I had my third set of Evenity shots today. I get the shots in the back of my arms. After the first set of shots, I had bruising, a lump at each injection site and soreness that lasted a week. After the second set of shots I had less bruising but was still quite sore for a week after injection. After today’s set of shots, I am very sore, have lumps at each site and some discoloration at the injection sites. Last week I started experiencing aching in my joints. When I mentioned it to the nurse today she said she’d pass the info on to my endocrinologist. The response I received from the doc was that he hadn’t heard that from other patients and doubted it was from the Evenity injections. When I looked at the Evenity site, joint point/aches was listed as a common side affect. I’m feeling a lack of confidence in my endocrinologist.

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I wonder if the pain is from bones growing. I find that MD's often don't know a lot about side effects. It is probably true that your doc has not heard this from many patients as yet so you are helping others by telling him. But that may not be a reason to lose trust in him.

I have pain from Tymlos but try to view it as a positive sign of the drug working. Not entirely sure that is true but! And I keep moving because that helps. Sorry you are in pain!

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@mikko

I am new to this group and am looking for support. I’m 65 years old and my spine T score is -3.2. No health issues except for osteoporosis and have not had any fractures. I had my third set of Evenity shots today. I get the shots in the back of my arms. After the first set of shots, I had bruising, a lump at each injection site and soreness that lasted a week. After the second set of shots I had less bruising but was still quite sore for a week after injection. After today’s set of shots, I am very sore, have lumps at each site and some discoloration at the injection sites. Last week I started experiencing aching in my joints. When I mentioned it to the nurse today she said she’d pass the info on to my endocrinologist. The response I received from the doc was that he hadn’t heard that from other patients and doubted it was from the Evenity injections. When I looked at the Evenity site, joint point/aches was listed as a common side affect. I’m feeling a lack of confidence in my endocrinologist.

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Hello @mikko, I, too, am new to the group. Also your age, osteoporosis of the (L) hip and spine. Have been on Prolia since 2009 with no side effects until 6/2021. An accident this summer—I fell and fractured 8 (L) ribs. I was supposed to go from Prolia to Recast in April. With the fractures my Endo feels that Evenity is what I should now switch to. Evenity's side effects scare me—I'm struggling with that in mind as I've read everything I can get my hands on about this drug. I'm sorry to hear that you're experiencing this pain. Perhaps your body is getting used to the drug and we can hope that by the 4th set things will dissipate. Good luck and please let us know how you're doing going forward.

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Thank you @windyshores and @giannam for your support. I, too, am hoping that the joint aches are my bones becoming stronger. @giannam I was concerned about Evenity’s possible side affects as well. Given my osteoporosis is severe and in my spine, hips, neck, etc, I knew I needed to do something because I wouldn’t improve doing nothing. I’m choosing to believe I’ve made the right decision with Evenity and hope the next dexascan I have will support that decision. All the best to you.

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I was ready to take a Evenity and then passed out in the shower and have been dealing with cardiologists and neurologists. Trying to get into Mayo to have a meeting of the minds between cardiology neurology and endocrinology to see if I would be a candidate for Evenity. I would also like some more feedback on reclast because I would consider that over prolia following evenity treatments.

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@dgm123s

I was ready to take a Evenity and then passed out in the shower and have been dealing with cardiologists and neurologists. Trying to get into Mayo to have a meeting of the minds between cardiology neurology and endocrinology to see if I would be a candidate for Evenity. I would also like some more feedback on reclast because I would consider that over prolia following evenity treatments.

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Dear @dgm123s, Im sorry to hear about your passing out in the shower. A ‘what if I’ situation I think about from time to time. Or slipping. usually I bring my phone in and place it on a towel where It can be gotten to if need be. May I ask, do you have any cardiac issues or that of fainting in general? Or was this a one time thing?

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@giannam

Dear @dgm123s, Im sorry to hear about your passing out in the shower. A ‘what if I’ situation I think about from time to time. Or slipping. usually I bring my phone in and place it on a towel where It can be gotten to if need be. May I ask, do you have any cardiac issues or that of fainting in general? Or was this a one time thing?

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Thank you. They put me through a battery of tests and found that I have mild coronary disease and carotid artery disease and possibly an irregular heartbeat. No one can definitively say whether any of these things contribute it to my passing out. I am trying to get in with the Mayo to get a meeting of the minds between the neurologist cardiologist and endocrinologist but they don't have anything available in the next 3 months. The neurologist found atherosclerosis in my brain and scattered lesions but he said were no big deal since I'm old at 68. But the cardiologist thinks it's vascular disease so I don't know it's very confusing with all the conflicting information and I still don't know why I passed out
is the bottom line.

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@dgm123s

I was ready to take a Evenity and then passed out in the shower and have been dealing with cardiologists and neurologists. Trying to get into Mayo to have a meeting of the minds between cardiology neurology and endocrinology to see if I would be a candidate for Evenity. I would also like some more feedback on reclast because I would consider that over prolia following evenity treatments.

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@dgm123s Are you considering Tymlos at all?

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I have started Evenity, third dose coming next week. Side effects are mild so far.

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@windyshores

@dgm123s Are you considering Tymlos at all?

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I would rather take Evenity if I have a choice and if I can get a second opinion at Mayo regarding my heart issues. I know there is a black box warning for cardiac problems and stroke for that drug but giving myself a shot every day I can't see myself doing that.

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