1. < Osteoporosis & Bone Health

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.

lauratys | @lauratys | Mar 12, 2023
In reply to @paala "Hello I just finished my 6th injection. After my injections the last 2 months I have..." + (show)
@paala

Hello
I just finished my 6th injection. After my injections the last 2 months I have increased burning pain in my knees, and now hands and wrists. I have not had this before the injections. I also notice my hair seems to be thinning. I am active and walk at least 3 miles a day regardless of the knee pain. My doctor has 9 women on Evenity who have had no complaints of joint pain. I asked him if the joint pain would disappear at the end of the 12 months. He could not say and suggested I have a Rheumatologist consult. I would like to know if anyone who has completed their Evenity course had side effects and if they decreased at the end of the course.

Jump to this post

I just saw your post. I completed 11 months of Evenity and am not getting the last injections to complete the 12 mos. My arms after injection were always tender for a couple of days which is not a big deal. However, I am active...walk, bike, mountain bike, ski, etc. and have always done so. Have a family history of low bone density but no one has broken a bone so I avoided meds like crazy due to side effects but did decide to try Evenity as my spine density was getting worse. I felt great and strong before Evenity but not now. Side effects for me seemed to get pretty noticeable around month 8 of injections. I now have weakness and stiffness in hips, shoulders, back of hands...I was trying to "tough it out" but I feel like I've ruined my health. I literally am uncomfortable just getting out of bed. I am hoping that these things will get better as Evenity leaves my system. I am 66 and otherwise was 100% healthy. Not happy at the moment and haven't had a scan yet to see if it helped at all. I am soooo hesitant to take anything to follow up after ending Evenity. My mom is 92, active and has had osteoporosis since her 40s and never taken meds and never broken a bone. Kind of wish I hadn't used Evenity as no one seems to be able to tell me if what I am experiencing will dissipate. I am just keeping active and pushing through the discomfort at this point. My last injection was only a month ago but I just couldn't justify having that last injection the way I feel.

REPLY
3 replies
windyshores | @windyshores | Mar 12, 2023

@lauratys As always, I want to jump in and say that I am so sorry for these side effects. But also add that some of us, with DEXA's in the mid -3's, have painful and debilitating fractures. Meds can be really helpful.

Your mother was fortunate and possibly smart about her moving, but bones can get fragile enough to break easily, especially the spine.

I chose Tymlos over Evenity. At first people seemed to tolerate Evenity really well and I was going to follow Tymlos with it but lately posts have been negative. I am sorry you are one of them.

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1 reply
lauratys | @lauratys | Mar 12, 2023
In reply to @windyshores "@lauratys As always, I want to jump in and say that I am so sorry for..." + (show)
@windyshores

@lauratys As always, I want to jump in and say that I am so sorry for these side effects. But also add that some of us, with DEXA's in the mid -3's, have painful and debilitating fractures. Meds can be really helpful.

Your mother was fortunate and possibly smart about her moving, but bones can get fragile enough to break easily, especially the spine.

I chose Tymlos over Evenity. At first people seemed to tolerate Evenity really well and I was going to follow Tymlos with it but lately posts have been negative. I am sorry you are one of them.

Jump to this post

Thanks for your reply! I am grateful for meds but Evenity has been a challenge for me. Am concerned about my spine and appreciate your input. Hope all goes well for you.

REPLY
1 reply
windyshores | @windyshores | Mar 12, 2023
In reply to @lauratys "Thanks for your reply! I am grateful for meds but Evenity has been a challenge for..." + (show)
@lauratys

Thanks for your reply! I am grateful for meds but Evenity has been a challenge for me. Am concerned about my spine and appreciate your input. Hope all goes well for you.

Jump to this post

Can you do Tymlos?

REPLY
me49 | @me49 | Mar 13, 2023
In reply to @lauratys "I just saw your post. I completed 11 months of Evenity and am not getting the..." + (show)
@lauratys

I just saw your post. I completed 11 months of Evenity and am not getting the last injections to complete the 12 mos. My arms after injection were always tender for a couple of days which is not a big deal. However, I am active...walk, bike, mountain bike, ski, etc. and have always done so. Have a family history of low bone density but no one has broken a bone so I avoided meds like crazy due to side effects but did decide to try Evenity as my spine density was getting worse. I felt great and strong before Evenity but not now. Side effects for me seemed to get pretty noticeable around month 8 of injections. I now have weakness and stiffness in hips, shoulders, back of hands...I was trying to "tough it out" but I feel like I've ruined my health. I literally am uncomfortable just getting out of bed. I am hoping that these things will get better as Evenity leaves my system. I am 66 and otherwise was 100% healthy. Not happy at the moment and haven't had a scan yet to see if it helped at all. I am soooo hesitant to take anything to follow up after ending Evenity. My mom is 92, active and has had osteoporosis since her 40s and never taken meds and never broken a bone. Kind of wish I hadn't used Evenity as no one seems to be able to tell me if what I am experiencing will dissipate. I am just keeping active and pushing through the discomfort at this point. My last injection was only a month ago but I just couldn't justify having that last injection the way I feel.

Jump to this post

Good morning, @lauratys,
I, too, am in a similar situation. I stopped Evenity after the 6th dose because of significant side effects fatigue, tingling in hands, feet and scalp, and fluctuations in blood pressure. Pretreatment my blood pressure was 122/77. It would spike after the injections to 151/101. Since the drug has a heart attack and stroke risk, I had to listen to my body.and discontinue the injections. They put me on Alendronate 70 mg to stabilize my gains, but I experienced daily migraines. I do have a history of migraines, but they would only
occur a couple of times a year. Almost 3 weeks after my second dose of Alendronate, the migraines stopped and I haven't had a headache since. It's been 3 months. I think I am just sensitive to medication. I contacted AMGEN to report my concerns about Evenity. It's a new drug and long term data isnt available yet. I'm no chemist, but Evenity has a half life of approximately 2 weeks. Since you were almost done with the protocol, you probably still have a lot in your system. They usually recommend a bisphosphonate after Evenity to stabilize gains. Please talk to your doctor about next steps and I hope he can give you his experience with patient side effects. Best wishes for a successful journey.

REPLY
1 reply
lauratys | @lauratys | Mar 13, 2023
In reply to @me49 "Good morning, @lauratys, I, too, am in a similar situation. I stopped Evenity after the 6th..." + (show)
@me49

Good morning, @lauratys,
I, too, am in a similar situation. I stopped Evenity after the 6th dose because of significant side effects fatigue, tingling in hands, feet and scalp, and fluctuations in blood pressure. Pretreatment my blood pressure was 122/77. It would spike after the injections to 151/101. Since the drug has a heart attack and stroke risk, I had to listen to my body.and discontinue the injections. They put me on Alendronate 70 mg to stabilize my gains, but I experienced daily migraines. I do have a history of migraines, but they would only
occur a couple of times a year. Almost 3 weeks after my second dose of Alendronate, the migraines stopped and I haven't had a headache since. It's been 3 months. I think I am just sensitive to medication. I contacted AMGEN to report my concerns about Evenity. It's a new drug and long term data isnt available yet. I'm no chemist, but Evenity has a half life of approximately 2 weeks. Since you were almost done with the protocol, you probably still have a lot in your system. They usually recommend a bisphosphonate after Evenity to stabilize gains. Please talk to your doctor about next steps and I hope he can give you his experience with patient side effects. Best wishes for a successful journey.

Jump to this post

Thank you so much for sharing this info. I, too, have a history of migraines but have only had a few since being diagnosed with Celiac 20 years ago and going gluten free so not sure what I’ll do going forward for a med as I would prefer no migraines.:-). I’ve noticed my hips are not as bad so I think it’s a matter of time to get back to normal for me! Thank you! Good reminder to report side effects.

REPLY
paala | @paala | Mar 13, 2023
In reply to @lauratys "I just saw your post. I completed 11 months of Evenity and am not getting the..." + (show)
@lauratys

I just saw your post. I completed 11 months of Evenity and am not getting the last injections to complete the 12 mos. My arms after injection were always tender for a couple of days which is not a big deal. However, I am active...walk, bike, mountain bike, ski, etc. and have always done so. Have a family history of low bone density but no one has broken a bone so I avoided meds like crazy due to side effects but did decide to try Evenity as my spine density was getting worse. I felt great and strong before Evenity but not now. Side effects for me seemed to get pretty noticeable around month 8 of injections. I now have weakness and stiffness in hips, shoulders, back of hands...I was trying to "tough it out" but I feel like I've ruined my health. I literally am uncomfortable just getting out of bed. I am hoping that these things will get better as Evenity leaves my system. I am 66 and otherwise was 100% healthy. Not happy at the moment and haven't had a scan yet to see if it helped at all. I am soooo hesitant to take anything to follow up after ending Evenity. My mom is 92, active and has had osteoporosis since her 40s and never taken meds and never broken a bone. Kind of wish I hadn't used Evenity as no one seems to be able to tell me if what I am experiencing will dissipate. I am just keeping active and pushing through the discomfort at this point. My last injection was only a month ago but I just couldn't justify having that last injection the way I feel.

Jump to this post

I hope you're back to yourself very soon. We want to soldier on, but at some point we know our bodies the best.
I've completed #7 and had manageable side effects (hoarseness, fatigue, headache, joint pain) until the last set. The cough has been relentless (now 13 days), all has been ruled out. I am now on a steroid. I am an daily walker and healthy otherwise. My doc says it isn't the Evenity because the research studies don't list it. Oh please.
I'm stopping, going to have a Dexa scan and see if there's improvement. Now scared to death of the Reclast he's proposing.

REPLY
lauratys | @lauratys | Mar 13, 2023

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.

REPLY
1 reply
pedsnurse61 | @pedsnurse61 | Mar 13, 2023
In reply to @lauratys "I just saw your post. I completed 11 months of Evenity and am not getting the..." + (show)
@lauratys

I just saw your post. I completed 11 months of Evenity and am not getting the last injections to complete the 12 mos. My arms after injection were always tender for a couple of days which is not a big deal. However, I am active...walk, bike, mountain bike, ski, etc. and have always done so. Have a family history of low bone density but no one has broken a bone so I avoided meds like crazy due to side effects but did decide to try Evenity as my spine density was getting worse. I felt great and strong before Evenity but not now. Side effects for me seemed to get pretty noticeable around month 8 of injections. I now have weakness and stiffness in hips, shoulders, back of hands...I was trying to "tough it out" but I feel like I've ruined my health. I literally am uncomfortable just getting out of bed. I am hoping that these things will get better as Evenity leaves my system. I am 66 and otherwise was 100% healthy. Not happy at the moment and haven't had a scan yet to see if it helped at all. I am soooo hesitant to take anything to follow up after ending Evenity. My mom is 92, active and has had osteoporosis since her 40s and never taken meds and never broken a bone. Kind of wish I hadn't used Evenity as no one seems to be able to tell me if what I am experiencing will dissipate. I am just keeping active and pushing through the discomfort at this point. My last injection was only a month ago but I just couldn't justify having that last injection the way I feel.

Jump to this post

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.

REPLY
1 reply
windyshores | @windyshores | Mar 13, 2023

I have had a good experience with Tymlos. I am sensitive to meds and had osteoporosis for years, trying to tolerate meds (including Fosamax) and finally found one I could take, and it is a bone builder, unlike the bisphosphonates. I started with a low dose (the pen has clicks) and moved up slowly to a full dose.

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