Romosozumab and Swelling: What Users Say

• Tom...
• Taken for 1 to 6 months
• March 20, 2023

For Osteoporosis "I took Evenity after an endocrinologist, with my immunologist’s blessing, decided it would help with osteoporosis after a hip stress fracture. It was the worst decision to listen to them, it’s poison! I felt sick after the first shot but wasn’t sure if it was the flu or not, so I continued taking it. After the second shot, I started experiencing diarrhea and swelling in my throat and mouth. By the third shot, my jaw started twitching and moving on its own. My upper and lower back teeth hurt, and I was biting my mouth, tongue, and cheeks while eating and even during the night. I also had headaches, continued flu-like symptoms, added fatigue, insomnia, and an overall feeling of being unwell. I finally stopped taking Evenity after the sixth shot, even though it was prescribed for 12 months. Now, I have a twisted jaw where my teeth no longer match up, and I can only eat using the teeth on my left side, which is horrible. The doctor prescribing it and my primary care physician never mentioned these horrible side effects in their notes. I saw an orthodontist, and my bite is completely off."

• Shr...
• Taken for 6 months to 1 year
• February 10, 2023

For Osteoporosis "Just completed round #9 of 12 injections. Things potential patients should know: 1) The injections are painful...think cortisone joint injection painful, but not quite. 2) Expect post-injection swelling, sensitivity, itching, etc. 3) Expect to have some degree of generalized malaise in the days following your injections. After the first round, I, personally, felt like I had the flu...minus any fever, nausea, or vomiting. Severe headache and body aches. Subsequent injections brought similar after-effects, though to a somewhat lesser degree. With every visit, you are asked the same questions about your general health-any new/planned dental surgery (osteonecrosis of the jawbone), stroke/heart attack, serious illness, or infection which makes me more than a little concerned about the long-lasting negative impacts on my health. At my most recent visit with the doctor, he indicated the best bone density improvement will only be about 10%. In my opinion, that's not much considering all the pain and misery I feel while taking it."

• AGM...
• Taken for 6 months to 1 year
• April 14, 2023

For Osteoporosis "I have taken 11 courses of Evenity thus far...and every time I have had pain/swelling/itching at the injection site, headaches, body aches, lethargy, and trouble sleeping in the days following the injection...though admittedly, the ill effects are not as severe now as in the early days of the treatment. However, I am concerned about the long-term after-effects, mostly issues with my teeth/jawbone. While I have been closely monitored by my dentist and all appears well thus far, it's still a worry. And too, the potential for bone build/improvement is minimal at best--10% according to my doctor. Seems like a lot of misery to go through for such a little bit of potential improvement. My doctor also recommended I move to another injectable medication once I finish with Evenity, but they ALL carry the same terrible potential risks, so I declined. I hope to have some bone density improvement, but honestly, I do not expect much."

• Ter...
• Taken for 1 to 2 years
• October 28, 2024

For Osteoporosis "The first three infusions by arm swelled up at the injection site and were bright red. Then my ankles, up to about midcalf, swelled up as well. I have some ankle swelling that now has not gone down. That was a result of the injections. I also had fatigue the first three months after the injections, but after that, it subsided."

• Cat...
• Taken for 6 months to 1 year
• May 29, 2024

For Osteoporosis "Both upper arms swell around injection site, red & hot to touch for three days after injections."