Anyone taken Evenity (romosozumab) for Osteoporosis?

Hi
I had one injection of Evenity and have decided to stop. Within the week, I ended up in the ER, with pneumonia. My lungs are compromised, and this scared the shit out of me. I called the company, they would not disclose if this would happen every month. I am out. As well, I developed a mild case of the shingles at the same time.

Thank you for replying @windyshores . I fall in my kitchen October 2022 and got 2 fractures in my vertebrae . Those healed fast. Now after nuclear bone scan I found out new ones probably from therapy . I been having not stopping back pain since end of March. I found out that I have a severe osteoporosis and started Evenity. I am going to have CT scan August 22 just to find out how many fractures I have. Pain doctor prescribed Tramadol and this not helping anymore. After that he advised to try Calcitonin. I can’t take strong pain killers because I am very sensitive to any medication. I am just praying that I can handle Evenity - my third shot coming at the end of the August. Not sure if I am going to take Calcitonin. My endocrinologist told me I can try but if it’s not helping with pain - stop immediately. Still not sure if I want this risk. Pain is taking over all my life . I am looking into Vertebroplasty.

@sunny65 so sorry you are in pain and I can relate. I still spend time in bed where I am most comfortable. Luckily I live alone! But things will get better for you!

If it were me I would try the calcitonin. It can't hurt. As I said, I tried it but could not take it due to salmon allergy.

My orthopedist offered kyphoplasty but told me the outcome would be the same with or without. Not sure that is true! I was scared of side effects and declined but there are threads on here with posts from people who benefited.

I cannot take many meds either. Most of my pain is not bone pain, but muscle spasms caused by the shortened spine. Klonopin is the only thing I can tolerate. I take 1/4 every once in awhile to relax muscles. The pain from fractures got better in a couple of months, but the muscle spasms, I believe, will continue.

My PT did not have me do any exercises but did ultrasound and massage which helped. I think PT's are afraid of me! Walking actually helps and tai chi is very very helpful.

For some people Evenity can cause pain. My docs told me Evenity grows bone as an anabolic for the first months and then becomes an anti-resorptive. There is a study using Reclast after 6 months of Evenity rather than after 12. I hope you can discuss how long to do Evenity with your endocrinologist.

I hope you get some relief.

This is very nice to know, thank you very much @laurie22 !

I was on Calcitonin for about 6 months, and my bone density got worse. Disappointing because I had zero side effects.

You always been so helpful and knowledgeable @windyshores ! My neurosurgeon told me almost same- don’t do any surgeries. Not sure why. I have an appointment with my endocrinologist on Monday and want to discuss how long I should stay on Evenity. I have some side effects- headaches, joint pain but it comes and goes. I am tolerating so far. I remember you said that Tymlos helped you a lot to increase bone density . I am on Medicare and coverage is pretty bad for Tymlos but if my endocrinologist suggests I would go for it. Not sure how long I have to use Evenity that blood test shows if there any improvement. I think that my current therapist is very skilled and exercises are super gentle- not what I had before. I am trying to wear brace as much as I can even it’s not comfortable especially when I go for my walks. I might try Calcitonin after I discuss further with endocrinologist. How are you tolerating Reclast? My endocrinologist mentioned that this would be her suggestion after Evenity.

Due to a history of breast cancer and taking chemotherapy years ago, it affected my bone density and now it's severe osteoporosis. I am 74 years old, and also have advanced chronic kidney disease, Parkinson's and anemia. I've also had a couple of bone breaks, a tibial fracture in 2020, and a hip replacement last year. My doctors suggested I take Evenity for my bones. I was in physical therapy after the hip replacement and my hip was feeling very good. However, after two months of the Evenity shots in April and May this past Spring, my hip that had the replacement got inflamed and the whole leg down to my knee was weak and hurt a great deal. I quit getting the shots after that and it's been 3 months now and it is still not right. I continue to exercise it hoping it will improve but it feels permanent. My doctors said this is an unusual side effect and that most people tolerate the drug well. I feel that because of my other chronic illnesses that this was too much for my body to deal with. Perhaps if you are in good shape and don't have many other health issues you would be able tolerate it. If anyone has any thoughts about this, I would appreciate hearing your experience. Thanks!

@lafee Keith McCormick told me that 40% of his patients on Evenity have joint pain. Evenity inhibits sclerostin and I have read that sclerostin is low in folks with arthritis. This stuff is complicated! Have you googled side effects? Most people tolerate Evenity well but those of us with some other health issues (I have lupus, afib, kidney disease and had breast cancer) may be more vulnerable to side effects.

Do you qualify for patient assistance for Tymlos? (Radius Assist gives free Tymlos if your income is less than three times the federal poverty line.)

I have been told that even a couple of months on Evenity can help. Can you have a DEXA scan to see where you are? Hope your doctors work together since your health is complicated!

@sunny 65 my orthopedist told me that now that he does a lot of kyphoplasties, the risk of leakage of cement into lungs is much lower. However, the cement becomes sort of like glass so with the multiple fractures I have, fracture risk would probably go up with all that glassy material between vertebrae. He said it can be helpful for shorter term pain relief but that the ultimate outcome is the same. I wish I had asked more questions about what he meant.

I wonder if you could get free Tymlos with Radius Assist. I got mine for free. You need to have an income less than 3 times the federal poverty line.

Glad you have a wise, gentle therapist! I was told to wear a brace as little as possible to keep muscles strong. I have a soft brace with velcro that I got months after my fractures and that I use rarely , only when lifting things different from my day to day practices. Your situation must be different from mine. Perhaps the doctors feel the brace helps stabilize your fracture(s). I am curious about this difference in advice!

I usually have pain when I start walking but if I walk more than 20 minutes it gets a lot better. There are times I almost turn around but after a 45 minute walk I actually feel better. Lifting is what gives me pain, and opening windows !

Thanks for your response! Because of my CKD, Evenity and Prolia were the only shots that were recommended as they would not affect the kidneys. I figured I'd have the same results with Prolia as I had with Evenity because I'm so sensitive to drugs so I'm not going to try it. I'll check about the Tymlos but frankly it's probably not going to work for me. Yes, I'll get another DEXA and my docs are working together now.