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My Experience with Evenity
I just finished my 12th set of Evenity injections today. I wanted to share my experience with other people who are considering starting Evenity or are already receiving the injections.
Cost and Ordering
My Medicare Advantage Plan covered most of the cost of the medication, and it was authorized very quickly. My out of pocket cost for all the medication was about $2800. My copayments varied depending on which coverage stage I was in. I used my insurance company’s online pharmacy, and the syringes were shipped to my doctor’s office. I never had to pay for the administration of the medication, which was always done by a medical assistant. I saw my doctor several times during the 12 months. The last visit was to go over what happens next.
Side Effects
I experienced some of the side effects listed on Amgen’s website, although not all at the same time. I reported the side effects to my doctor and to Amgen. The side effects included injection site pain, bone pain, joint pain, muscle pain, eczema-like rashes, and fever. I never considered stopping the treatment due to the side effects. The majority of the side effects that I experienced didn’t last very long after each set of injections- sometimes just a day or two. The eczema-like rashes lasted a couple of months.
After Evenity
The next steps are a bone density scan and Prolia injections which are once every 6 months. I’m not sure how long I will be on Prolia.
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@lbegg: It seems you are a person who researches drugs and probably have a plan to lock in the good bone density resolution from Evenity. After your January DEXA scan will you please share your reaction and thoughts for the next drug you are willing to take? I am very interested in your thoughts and actions.
Best of health to you. dbamos1945
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1 Reaction@ditobin Thank you for your response. It is interesting that your pain went away when off Evenity for awhile. My issues started after 6-7 injections and I wish I had stopped then as I believe the most bone building affects are seen in first six months of injections. It only improved my spine numbers and that was a significant improvement though. Thank you for your kind words and input.
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1 Reaction@lauratys Hi, I thought I’d update you and anyone else who followed this thread. I had gone off Evenity after nine months because of excruciating pain in my hips, thighs, back of knees, lower back, and the back of upper arms. My doctor did blood work and found inflammation (There was no inflammation found the first time I had the bloodwork done a few months prior to the second round). I have been diagnosed with polymyalgia rheumatica. I am currently on prednisone and unable at this point to take any medication for osteoporosis. I called Amgen. They took all of my medical information and will report it to the FDA. If you or anyone else has this type of pain, I would suggest you request blood work.
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2 Reactions@mave14 Thank you! I think I will do that.
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1 ReactionIt’s my understanding that once you are on Prolia, unless you stop after one month, you are on it for life. Check with your doctor.
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1 ReactionLaura, the pain has definitely eased, and is nothing like it was - though still not ‘normal’ for me. The Achilles particularly has calmed down quite a bit but is still tender. I start physical therapy next month, but now starting to wonder since your story, if the orthopedic doc should have ordered an MRI. What if I have a tear also ?!
And all the Dr.’s just want to sing the praises of Evenity & sort of poo poo any causal relationship. It’s been terribly frustrating. I wish you well 💕
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1 Reaction@lauratys
It is certainly easier to stop prolia after one or two shots (rebound not as severe and you still need to followup with another med) but not impossible. My neighbors had both been on Prolia for 10 years. Their new endocrinologist transitioned them both using reclast.
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1 Reaction@lbegg I did 11 mos of Evenity. Pain in joints, muscles etc was debilitating and I was 67, active no aches or pains prior to starting. After 6-7 months these pains were awful and I was told it was not related to Evenity. As I am not one to quit I kept it up until 11th then didn’t do last injections. Listen to your body. My specialist, a PA, finally believed it was perhaps due to Evenity. I know it was. I am taking Actonel now. Most bone building from Evenity occurs in first 6 months. It helped my spine which was the worst -3.8 I think but other sites nominal improvements but out of osteoporosis range now. Actonel has kept me pretty stable. After Evenity I didn’t want to do Reclast as I was not comfortable doing another injection with unknown results. Stopped Evenity 2/24 and have had tendon issues since. Coincidence? Idk? Never had a health issue prior to meds except for BD of course! My best to you.
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2 Reactions@lauratys Best of luck to you.