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.

I'm curious to hear more about what Evenity side effects people are experiencing and whether these recur around month after month. I had my second set of injections yesterday, and felt nauseous and wiped out for the rest of the day. Still not feeling quite right. More or less the same last month. I had twice-annual Prolia injections for five years and never experienced any side effects, so this is new and frankly kind of scary. Little or no solid, big-sample-size data are available about truly common side effects (the drug is too new) and what-- besides heart attack or stroke symptoms -- really should trigger a call to the doc (or trip to the ER!). So I'd feel reassured if it turns out that other people feel funky for a day or two after every injection. Thanks!

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@hfreifeld

I'm curious to hear more about what Evenity side effects people are experiencing and whether these recur around month after month. I had my second set of injections yesterday, and felt nauseous and wiped out for the rest of the day. Still not feeling quite right. More or less the same last month. I had twice-annual Prolia injections for five years and never experienced any side effects, so this is new and frankly kind of scary. Little or no solid, big-sample-size data are available about truly common side effects (the drug is too new) and what-- besides heart attack or stroke symptoms -- really should trigger a call to the doc (or trip to the ER!). So I'd feel reassured if it turns out that other people feel funky for a day or two after every injection. Thanks!

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If u r on Facebook there is an Evenity group u can join & find a lot of info.

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Hi Everyone,
I have visited your posts a couple times before. I wanted to give my 2 cents worth. So, I have had 6 shots. I have had various issues after each treatment. Headaches early on, but those are gone now. It seems that the longer I take these shots, I get more side effects. For instance, my jaw the other night hurt like the dickens. My legs have felt weak at time. My hands hurt awful sometimes. Also had blurred vision in one eye and for most of the month, I have fatigue, which means I sleep more than before Evenity. Also, losing my hair. I see an Endocrinologist and she just wants to do Reclast injection to seal my bones within 2 months of my 12th shot. I did lab work at month 4 but now she does not want to see me until I complete my treatment. Considering the risk and the fact that systolic is creeping way too high, I am going to check with my PCP about seeing a Rheumatologist about what to do next - Reclast or Alendronate. There are studies out there to follow Evenity with Alendronate which have better results than Evenity and Reclast. Well I see my PCP in a week and I will see how my blood pressure is. Worried about stroke which is a rare side effect of Evenity.

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@hfreifeld

I'm curious to hear more about what Evenity side effects people are experiencing and whether these recur around month after month. I had my second set of injections yesterday, and felt nauseous and wiped out for the rest of the day. Still not feeling quite right. More or less the same last month. I had twice-annual Prolia injections for five years and never experienced any side effects, so this is new and frankly kind of scary. Little or no solid, big-sample-size data are available about truly common side effects (the drug is too new) and what-- besides heart attack or stroke symptoms -- really should trigger a call to the doc (or trip to the ER!). So I'd feel reassured if it turns out that other people feel funky for a day or two after every injection. Thanks!

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I am getting ready for my eight shot. I always feel tired after getting the shot and the following week. However, I don't feel nauseous. Sometimes, it's a little sore and my arm gets a knot for a couple of days then it goes away. So far, I have been pleased with getting my shot. I hope that it can fix my problem so that I can get surgery.

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@hfreifeld

I'm curious to hear more about what Evenity side effects people are experiencing and whether these recur around month after month. I had my second set of injections yesterday, and felt nauseous and wiped out for the rest of the day. Still not feeling quite right. More or less the same last month. I had twice-annual Prolia injections for five years and never experienced any side effects, so this is new and frankly kind of scary. Little or no solid, big-sample-size data are available about truly common side effects (the drug is too new) and what-- besides heart attack or stroke symptoms -- really should trigger a call to the doc (or trip to the ER!). So I'd feel reassured if it turns out that other people feel funky for a day or two after every injection. Thanks!

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I had my first set of Evenity injections on January 19th. I had many side effects which I posted earlier. In addition to those I listed in the post, I suffered from heart palpitations for several days. I usually have a high level of energy which has dissipated after the injections. Hopefully, based on its half-life, it should be out of my system soon. Thank goodness! For the small increase in improved scans or none at all based on my research, Evenity is hardly worth the risks for me. It could work for others…just not me. I am headed back to my usual regimen of supplements, exercise and nutrition which I have been lax in implementation over the past year. I know that you will make the best decision for yourself.

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@knpbads69

I am surprised no one has replied to your post. I too have experienced chronic joint pain since I started 2 months ago. Ironically, I received my 3rd session of 12 today. I worked around the house for about an hour this afternoon and I can hardly move without stiffness and pain. Unfortunately, I received my last dose of Covid -19 around the time I started Evinity, so I really don’t know which is the culprit, but I know it’s from one or the other. I am 51 and my dr stated my density numbers were so low, he knew my insurance would cover. So, I had to decide what was important to me. I was very encouraged knowing my bones will actually gain instead of just halt. But, I am having growing concern as time goes on. About 2 weeks after my 1st shot (early September) I worked around my house for several days lifting, pushing etc… my body has not recovered since. It started with lower back pain and slowly started going down the side of my right thigh. I can not stand longer than 3-5 minutes without excruciating pain and burning!!! Ibuprofen and lots of it will help but I know that regimen is detrimental also. I’ve been told by many it sounds like my IT band, not sciatica. I will follow up with my dr in January and I will see what he says if I can endure that long. I will try to remember to update thread then. I would love to hear from anyone else who may be experiencing same symptoms.

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I am not a medical person: Could you possibly have a Burst Compression Lumbar I Fracture? I read your post about lower back pain and can't stand over 3-5 minutes. I fell 1.5 years ago, and had this fracture but I could not get what was wrong fixed. My fall was extremely painful for 6.5 weeks and then it just hurt. Now, I can't stand over 4-5 minutes and must sit down. My surgeon has stated that I have to get my bones stronger before he can fix my problem. I was dx'd with Osteoporosis, which I was not aware that I had. I will be getting my 7th shot at the end of this month. I get tired the day of the shot and then a little tired the rest of the week.

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@dianestanley

I am getting ready for my eight shot. I always feel tired after getting the shot and the following week. However, I don't feel nauseous. Sometimes, it's a little sore and my arm gets a knot for a couple of days then it goes away. So far, I have been pleased with getting my shot. I hope that it can fix my problem so that I can get surgery.

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Correction: I will be getting my 7th Evenity Shot.

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@arlene7

Hi there, My injections are given on the back side of each arm, and yes it is tender for about a day or so. It’s a bit swollen around the area where the medication is injected, which is completely normal. The medication ends up dispersing/absorbing into your body after a while. Please keep me posted, hoping tomorrow is a better day.

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Hi Arlene. Please could you let us know how your Evenity journey ended. Did you have an improvement in your DEXA scores? Are you glad you completed the course? Any side effects? Thank you

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@englishflorals

Hi Arlene. Please could you let us know how your Evenity journey ended. Did you have an improvement in your DEXA scores? Are you glad you completed the course? Any side effects? Thank you

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Hi there!
Yes, my endocrinologist was very please with result from the Evenity. My scores did increase.
Since then I’ve had two Reclast infusions (annually) and still doing well. I am glad I took Evenity.

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@arlene7

Hi there!
Yes, my endocrinologist was very please with result from the Evenity. My scores did increase.
Since then I’ve had two Reclast infusions (annually) and still doing well. I am glad I took Evenity.

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That's wonderful! Pleased for you. Thank you for sharing.

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