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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@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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In replyContentandell, I am also lactose intolerant. I have been using almond milk that tastes like regular milk. I use the original unsweetened with 30 calories. It contains calcium, vitamin E and vitamin D. You can also make your own but I prefer to buy it. Just a suggestion.

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I just finished my 12th dose of evenity. Dexa showed 4% increase in bone density in lumbar spine and 3% overall in hips. I will start proleia next month.. I never had any side effects from the shots other than a sore arm at injection sites.
I saw another post that someone mentioned she was taking a Second year of evenity shots. Anyone know more. Although my gains were moderate, I am encouraged and thankful to have treatments available.

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@lpenny

In replyContentandell, I am also lactose intolerant. I have been using almond milk that tastes like regular milk. I use the original unsweetened with 30 calories. It contains calcium, vitamin E and vitamin D. You can also make your own but I prefer to buy it. Just a suggestion.

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@lpenny Thank you for the suggestion but I am drinking Fairlife non-fat milk which is lactose-free, and due to "ultrafiltration" it has more calcium and protein than regular non-fat milk. The protein of course is as important as the calcium, and almond milk has little if any.

Interestingly though, after I started using this milk I accidentally discovered that I am no longer lactose intolerant! The problem came on suddenly and only lasted for a few months. For those few months, it was fairly severe though. I have no idea what caused it but I am presuming a medication must have triggered it and as my body adjusted to whichever medication it was, the intolerance got better. Since I use that milk and pretty much only eat aged cheeses and occasionally yogurt it is possible that I still have some degree of intolerance but it has not shown up if I do. I do eat ice cream occasionally but have had no problem with that.
JK

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My doctor will not prescribe Evenity yet due to the serious heart risks. My latest DEXA result iis -5.3 so it is severe. I think I am going to be on TYMLOS for 2 yrs (similar to Forteo which I took many years ago) then switch to Prolia. He seems pretty convinced this is the best approach for me.

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@dee12

Hi, new here, my Endo is recommending I start on Evenity & I have many questions, of course. My Endo is a 45 minute drive & I am wondering if it might be better to start with my Rheumatologist, 10 from home. My biggest concern is possibly having a reaction while driving. Has anyone had any immediate reactions I should be aware of? Appreciate any input.

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I've had 11 dosages of Evenity and am scheduled for my last next week. After I received the first set of shots (there are 2, one in each arm for me), the nurse kept me there for 30 minutes to make sure I had no reactions, which I did not.
Now I go get my shot and drive home immediately. The only reactions I have are a little soreness at the injection site, which is gone within a day or so.

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Just a note to anyone on Evenity that has questions about dental work while on the medication.....My dentist told me a couple of months ago that I had a wisdom tooth coming in that was slightly impacted (yay) and that it should be extracted before it caused real problems. My Osteoporosis provider suggested that I do that before I finished with Evenity, as it had the least chance of causing ONJ, especially since it was only one tooth that needed to be extracted. The Dental Surgeon was very aware of Evenity and he basically had no concerns about any issues so surgery was scheduled and I felt pretty good about it.
Surgery was 2 weeks ago and I've had no problems at all, healing was quick and I'm not experiencing any ill effects.

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@kkp10

I just finished my 12th dose of evenity. Dexa showed 4% increase in bone density in lumbar spine and 3% overall in hips. I will start proleia next month.. I never had any side effects from the shots other than a sore arm at injection sites.
I saw another post that someone mentioned she was taking a Second year of evenity shots. Anyone know more. Although my gains were moderate, I am encouraged and thankful to have treatments available.

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Congratulations on completing your Evenity course of treatment! I'm so encouraged by your results and happy for you.

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Prior to a follow up appointment with my endocrinologist on January 4, she ordered a DEXA scan and bloodwork. The DEXA indicated further bone loss since the previous test on May of 2021 resulting in scores of -5.2 in spine, -5.1 in femoral neck and -4.7 total hip; bloodwork was normal. After more than a year of intense research and worry, I decided to start treatment. On February 1, I had my first set of EVENITY injections, my doctor's first choice. It was easier than many other shots I've had, and I had no immediate side effects, not even a headache! I slept extremely well that night, and for the next several days. I had none of the possible side effects that could happen except for minor pain at the injection site. (I had both injections in my right arm.)
Obviously, I am extremely relieved to have things go so well thus far, and grateful for the patience and guidance received from my endocrinologist. I'm looking forward to March 1 when I will get my next injections. Also, I am grateful there appears to be something that can improve my bone health. I am now even more encouraged to take other steps that will improve my bone numbers and overall health. I just reached 77, am mostly otherwise healthy, and I am fairly active. Despite years of living with Osteoporosis, I have yet to break a bone, though I have fallen on a tennis court and stone floors/stairs more than once. I'm also grateful to my supportive husband. Life is good! Thanks to all of you who have encouraged me by sharing your very helpful experiences, knowledge, resources and suggestions. May we all be well and fracture free. Finally, thank you Mayo Clinic Connect for offering this very helpful site.
Kolika

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@willow10

Just a note to anyone on Evenity that has questions about dental work while on the medication.....My dentist told me a couple of months ago that I had a wisdom tooth coming in that was slightly impacted (yay) and that it should be extracted before it caused real problems. My Osteoporosis provider suggested that I do that before I finished with Evenity, as it had the least chance of causing ONJ, especially since it was only one tooth that needed to be extracted. The Dental Surgeon was very aware of Evenity and he basically had no concerns about any issues so surgery was scheduled and I felt pretty good about it.
Surgery was 2 weeks ago and I've had no problems at all, healing was quick and I'm not experiencing any ill effects.

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I'm so glad to hear that u had no problems with getting tooth pulled. I will be starting Evenity next month & that was my concern. What are you following up with?

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@kolika

Prior to a follow up appointment with my endocrinologist on January 4, she ordered a DEXA scan and bloodwork. The DEXA indicated further bone loss since the previous test on May of 2021 resulting in scores of -5.2 in spine, -5.1 in femoral neck and -4.7 total hip; bloodwork was normal. After more than a year of intense research and worry, I decided to start treatment. On February 1, I had my first set of EVENITY injections, my doctor's first choice. It was easier than many other shots I've had, and I had no immediate side effects, not even a headache! I slept extremely well that night, and for the next several days. I had none of the possible side effects that could happen except for minor pain at the injection site. (I had both injections in my right arm.)
Obviously, I am extremely relieved to have things go so well thus far, and grateful for the patience and guidance received from my endocrinologist. I'm looking forward to March 1 when I will get my next injections. Also, I am grateful there appears to be something that can improve my bone health. I am now even more encouraged to take other steps that will improve my bone numbers and overall health. I just reached 77, am mostly otherwise healthy, and I am fairly active. Despite years of living with Osteoporosis, I have yet to break a bone, though I have fallen on a tennis court and stone floors/stairs more than once. I'm also grateful to my supportive husband. Life is good! Thanks to all of you who have encouraged me by sharing your very helpful experiences, knowledge, resources and suggestions. May we all be well and fracture free. Finally, thank you Mayo Clinic Connect for offering this very helpful site.
Kolika

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You sound like you are about where I am with bone density. I am 64 and active and scared of the evenity but told that would be the best for me. I am dealing with a dental issue and will start after that. Please let me know how you do with the your treatment.
All the best wishes for a healthy and happy year with big improvements in your bone health.
Candy

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