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.

@pedsnurse61

I am so sorry to hear about all your side effects from taking Evenity. I have only had one injection and so far had minimal side effects ( headache, fatigue and soreness where the injections were given). I can live with these but if I experience any additional side effects I will need to rethink whether I will continue. My mom also had Osteoporosis and had 2 hip fractures, the last one ending her life at age 90. Since I was diagnosed my MD's have limited the sporting activities I used to do, so at the moment the only exercise I do is weight training and walking everyday. I am scared to do any other sporting activity and I am 61 being diagnosed at age 50. Please keep us posted on your DEXA results and I hope you feel better soon. My concern for you is I was told that I would have to take something after Evenity( my MD wants me to take Prolia) to maintain any gains(hopefully) from Evenity. Good luck with your decision. I am so grateful that I found this site, so much support and knowledge I am getting.

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Consider yourself lucky to have had those minimal side effects. I only had one set of Evenity injections with severe side effects that I listed in a previous post. Always listen to your body. It knows best! Based on all posts I have read coupled with additional research, the improvements in scans after the full treatment were minimal…perhaps a 3-4% improvement in scans. That is not worth the side effects in my humble opinion. Again, listen to your body. You will make the best decision for yourself!

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@sedrake51

Consider yourself lucky to have had those minimal side effects. I only had one set of Evenity injections with severe side effects that I listed in a previous post. Always listen to your body. It knows best! Based on all posts I have read coupled with additional research, the improvements in scans after the full treatment were minimal…perhaps a 3-4% improvement in scans. That is not worth the side effects in my humble opinion. Again, listen to your body. You will make the best decision for yourself!

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Thank you, I will listen to my body. I tried many medications when I was first diagnosed ( that I spoke about in previous posts) with no results. It's been 6 years since I have been on any medications and I only decided to try Evenity because my DEXA scan which was stable got much worse. As I stated I will continue to take this as long as I don't have any severe side effects. I am trying to think positive, that's all I can do for now. I recently became a Grandmother and I want to be able to lift/play with my Grandson without having to worry about a fracture in my spine or hips.

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@pedsnurse61

Thank you, I will listen to my body. I tried many medications when I was first diagnosed ( that I spoke about in previous posts) with no results. It's been 6 years since I have been on any medications and I only decided to try Evenity because my DEXA scan which was stable got much worse. As I stated I will continue to take this as long as I don't have any severe side effects. I am trying to think positive, that's all I can do for now. I recently became a Grandmother and I want to be able to lift/play with my Grandson without having to worry about a fracture in my spine or hips.

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Congrats on becoming a grandmother! I wish nothing but the best for you on your Evenity journey. Hopeful that you will garner wonderful results. Have you considered or already used Tymlos? @windyshores has some positive remarks about it. This has been a difficult journey for me already and I am hopeful for positive results for all of us without enduring the horrendous side effects.

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@sedrake51

Congrats on becoming a grandmother! I wish nothing but the best for you on your Evenity journey. Hopeful that you will garner wonderful results. Have you considered or already used Tymlos? @windyshores has some positive remarks about it. This has been a difficult journey for me already and I am hopeful for positive results for all of us without enduring the horrendous side effects.

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Thank you for the congratulations. I have taken Forteo in the past which is similar to Tymlos and unfortunately had no improvement. I wish you luck in your journey also.

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Keep in mind that after the 12 months of Evenity, it is recommended that you continue with a different treatment. I agree, listen your body. My cardiologist pretty much said the same as yours, the benefits outweigh the risks, but my body was very good at saying this drug was not for me.

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Anyone get dizzy right after the shots?

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@dmanduca

Anyone get dizzy right after the shots?

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No dizziness.

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@lauratys

Hi, I also am quite hesitant to do anything other than Fosomax as it has been used for so long and tolerated quite well. I hope that your experience improves. I am not schedule for a Dexa scan until September which is a bit frustrating as that is several months and I am not sure I will know how much Evenity even helped. I am regretting using the Evenity for the first med I've ever used but am hopeful that my side effects will go away! I am pretty sure that they don't quite know what all the side effects of Evenity are and you are correct in saying we know our own bodies the best...even if we don't have the advanced knowledge of knowing how to best fix them! Hope your scan shows improvement! I going to do the good holistic things and pray and choose a drug that has a longer track record and also include drug holidays.

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I recently paid for my own DEXA ( but doc had to approve) as insurance required 2 years. But I needed to know where I stood with a bone killing med that I have to take. It was $100.00.

The good news is that I held steady over 11 mos. Which gave me a relief … sometimes we just need to know to alleviate anxiety… also not good for our health.

I hope you get the information you need.

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@anjalima

I recently paid for my own DEXA ( but doc had to approve) as insurance required 2 years. But I needed to know where I stood with a bone killing med that I have to take. It was $100.00.

The good news is that I held steady over 11 mos. Which gave me a relief … sometimes we just need to know to alleviate anxiety… also not good for our health.

I hope you get the information you need.

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I’m scheduled for self pay DEXA this week so I’ll find out if 11 mos if Evenity helped. Hoping side effects that feel like arthritis/tendonitis dissapate. I’m glad I didn’t do the final injections as I was getting so it was so uncomfortable to move. I almost made it to the end! I’ll let you know results of scan. Thx!

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@lauratys

I’m scheduled for self pay DEXA this week so I’ll find out if 11 mos if Evenity helped. Hoping side effects that feel like arthritis/tendonitis dissapate. I’m glad I didn’t do the final injections as I was getting so it was so uncomfortable to move. I almost made it to the end! I’ll let you know results of scan. Thx!

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My endo told me that the greatest gains from Evenity comes in the first 6 months and increases slower from there. So making it to 11 months is good. I made it to 9 months and stopped because of the increasing joint pain. I won't have a density until January. A friend finished her 12 months and had a greater gain in her hips than her spine but she was pleased with the results. Sorry I don't remember the exact numbers.

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