My Experience on Evenity for Treating Osteoporosis

Posted by arlene7 @arlene7, Jul 7, 2020

Thought I would share for those considering or on Evenity for osteoporosis:
Afer much research and discussions with my GP and Cardiologist, I have decided to start my treatment with Evenity injections. As with all drugs, there are many side effects. My biggest concerns were stroke and heart attack. However, considering that I do no have any history for either, for me personally, the benefits outweigh the risks. As my GP said to me, "if everyone only thought about the side effects of the drugs, no one would be taking them".

I had my first injections (subcutaneously in the back of each arm) on June 30th. The nurse that administered the injections discussed the drug in depth, along with all the possibilities that may occur. She also mentioned that for all the patients that she has seen, none has had any side effects.

The injections are once a month for only one year, so I'm hoping that this works well for me and I can improve my bone density, especially in my spine, where I need it the most.

My endocronologist has also prescribed Hydrochlorthiazide for my idiopathic hypocalcemia. I have an appointment with an allergist this month to confirm whether I still have an allergy to sulfa drugs, since this drug contains sulfa. Apart from this I take D3 orally and try to obtain additional calcium through foods not supplements. Trying to walk 3-4 times a week and will begin with a few weight bearing exercises.

My journey began September, 2019 when I was diagnosed with severe osteoporosis. After waiting to see three doctors, receiving three denials from insurance company for Evenity, which took several months, I am hopefully on my way for a favorful outcome.

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

@arely

HI
Thank you for sharing. Just took shot number 8 month
I wake up every morning same way. Can barely move and every bone in my body hurts. I'm going keep taking them.
One Month at time !!! I have already fell once broke my
femur. ortho doctor told me Thank Goodness you had
reclast several months Before!!!

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I am so sorry you suffer so. Did this painful life start with the Evenity? A break in the femur is one of the side effects mentioned for Evenity. But your ortho doctor said thank goodness for reclast. Are you referring to Evenity when you mention "reclast"? I postponed my shots until tomorrow because I didn't feel well today.

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@arely

HI
Thank you for sharing. Just took shot number 8 month
I wake up every morning same way. Can barely move and every bone in my body hurts. I'm going keep taking them.
One Month at time !!! I have already fell once broke my
femur. ortho doctor told me Thank Goodness you had
reclast several months Before!!!

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Is the bone pain from the injections?

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Hi Everyone-

I just received my second set of Evenity injections. Got them in my arms. I had no side effects from my first but the day after my second I got a rash and bruises all over my stomach and sides. I can't think of anything else that would have caused it. Has anyone else experienced this reaction? I don't take any other medications. And do not have any allergies to anything. Will call my endocrinologist on Monday but she keeps telling me that none of her other patients have had any adverse reactions. Thanks.

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@ddal23

Hi Everyone-

I just received my second set of Evenity injections. Got them in my arms. I had no side effects from my first but the day after my second I got a rash and bruises all over my stomach and sides. I can't think of anything else that would have caused it. Has anyone else experienced this reaction? I don't take any other medications. And do not have any allergies to anything. Will call my endocrinologist on Monday but she keeps telling me that none of her other patients have had any adverse reactions. Thanks.

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Google rare side effects of Evenity.

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I just finished Evenity, and had such great hopes after 25 years with osteoporosis. Most of my osteoporosis is in my hips, slightly in my neck.
Evenity did nothing for my hips and increased my neck by.07 . So what to do ?. Prolia in my opinion should be taken off the market, horrible drug.
I have taken fosonex (rotted my jaw, broke four teeth) Boniva(waste of money), hormones, gave me cancer, strontium, didn’t work. So now endocrinologist
Want me to take reclast that it just a big dose of fosanex to “preserve “ the gain. There was so little gain, I really don’t know what to do. I can find no one that actually gives an honest answer. Seems like most doctors just repeat more verbiage that the drug rep tells them. I go to the “best” dept in Northern California, so an alternative doctor isn’t even realistic. I had such high hopes for evenity. Noticed that in their advertising, they no longer talk about anything but gains to the spine. 60 per cent of the people that take evenity show NO gain in their hips. No wonder they make you sign a liability release ever time that you get a shot. I wondered why, now I know, so you can’t sue them for false advertising.

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@sonomagal22

I just finished Evenity, and had such great hopes after 25 years with osteoporosis. Most of my osteoporosis is in my hips, slightly in my neck.
Evenity did nothing for my hips and increased my neck by.07 . So what to do ?. Prolia in my opinion should be taken off the market, horrible drug.
I have taken fosonex (rotted my jaw, broke four teeth) Boniva(waste of money), hormones, gave me cancer, strontium, didn’t work. So now endocrinologist
Want me to take reclast that it just a big dose of fosanex to “preserve “ the gain. There was so little gain, I really don’t know what to do. I can find no one that actually gives an honest answer. Seems like most doctors just repeat more verbiage that the drug rep tells them. I go to the “best” dept in Northern California, so an alternative doctor isn’t even realistic. I had such high hopes for evenity. Noticed that in their advertising, they no longer talk about anything but gains to the spine. 60 per cent of the people that take evenity show NO gain in their hips. No wonder they make you sign a liability release ever time that you get a shot. I wondered why, now I know, so you can’t sue them for false advertising.

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That is quite interesting re: hip results with Evenity. Where did you get that statistic? I am on my 5th injection and have terrible bone loss in my spine and osteoporosis in my hip as well. It seems that all Evenity patients should insist on immediate bone scans following their course of injections rather than wait the customary two years. I will also be sure the same bone scan machine is used so I get accurate comparative results. Going through these injections is not a walk in the park so I am hopeful for positive results.

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I wonder what kind of a reply I will receive after asking the NP this morning if aneurysms are included in the black box warning. I supposedly have a small one on a carotoid artery and possibly one in my brain although that may be a fenestration and not an aneurysm. For some reason, those make osteoporosis seem minor and not worth dominating my life. Even my cll does not do that as long as it stays at stage 0. Just get monitored evey six months.

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I called Amgen. No info available regarding aneurysms. However, Evenity is supposed to lower BP which might be beneficial.

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Hello: My osteoporosis was discovered after I was diagnosed with Panhypopituitarism which is a quite rare disease of the pituitary gland. It was found during an MRI of my head which showed that I basically had about zero pituitary tissue left in my head. That was over twenty years ago and since then I’ve tried to find some way to stop the intense pain in my back, hips and legs.

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@birdie78

That is quite interesting re: hip results with Evenity. Where did you get that statistic? I am on my 5th injection and have terrible bone loss in my spine and osteoporosis in my hip as well. It seems that all Evenity patients should insist on immediate bone scans following their course of injections rather than wait the customary two years. I will also be sure the same bone scan machine is used so I get accurate comparative results. Going through these injections is not a walk in the park so I am hopeful for positive results.

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Forgot where I saw them because I have look on so many sites. I did notice
this week that Evenity changed its advertising saying 70 per cent see a positive gain in their spine
OP, I did see some gain there, but in the same article 60 per cent had no gain in the hips. (Of course they don’t advertise that.) I just don’t want others to expect as I did that this is the answer for hip OP new bone building. I expected that Evenity would help all bones equally, and it doesn’t . Doctors need to know this, but who is going to tell them? Certainly not the drug manufacturers.

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