← Return to My Experience on Evenity for Treating Osteoporosis

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@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.

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Replies to "I just saw your post. I completed 11 months of Evenity and am not getting the..."

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.

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.

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.