Anyone taken Evenity (romosozumab) for Osteoporosis?

Please tell me about your workshops.

I am considering taking Evenity. I am searching through all of your posts to find out, how Evenity is tolerated by you, if you had serious side effects, and yes, what to do about dental care while you are getting this drug or after.
I had to take Alendronate for seven years until 2018. I had one infusion of Reclast in 2013, after my bones were getting really bad from breast cancer treatment. I have had multiple discussions with oral surgeons because I have had dental problems while on the drugs and after I stopped the drugs. I did not know before taking all these drugs, that taking them would impact me for years to come in my dental care.
In 2018 and 2022 I was told by different maxofacial surgeons not to extract the teeth that were ailing me. I was told, I was at huge risk for osteonecrosis. All of this mostly because of the IV Reclast infusion and to a lesser extent because of Alendronate. It cost me a fortune (multiple root canals etc.) to save the teeth which really were not savable. One tooth was cut in half to keep it in. I wonder now, if Evenity could bring me back into this same situation. My teeth are in horrible shape, as I really could not fix them right. Does anyone know more about dental extraction and Evenity?
There is plenty of literature from maxofacial surgeons and American Dental Association on the prevention of osteonecrosis during dental procedures in patients who have taken bisphosphonates. Perhaps some of these guidelines also apply to Evenity, I do not know. When infection of gums or near bone I always immediately take antibiotics.

Good evening @kay44. And, of course, welcome to Connect. As I hope you discover quickly, this forum is all about sharing. And that is the way that we all learn about our conditions and that means me. How I wish I had asked your questions earlier before I followed the wrong person to make my decisions.

My daughter worked for periodontists for years and I never thought to ask them. When I did, their feedback about my situation was priceless. I think I am finally on the right path. What did help me was talking directly to the medical professionals at the manufacturer's headquarters. The number for Amgen which makes Evenity and Prolia is 800 772-6436....option 2.

Evenity is the newest bone-building osteoporosis medication so its history is still evolving. It also has the ability to prevent reabsorption to some degree.

I am so sorry you have had such a rough road so far. I also chose a bone-building route with Tymlos. My problem was an anxious endocrinologist who started me on bisphosphonates before my Dexa scores indicated that there was a sense of urgency.

Please let me know if you received the appropriate information for your decision.

May you be free of suffering and the causes of suffering.
Chris

Thank you for your kind reply. I will call the company, but I am also looking for the original phase III trials of this drug to learn more about how many people have had cardiovascular side effects. So far, I know nothing about Tymlos, but I will explore it. Kay44

My Dr. wants me to do a reclast infusion once a year. I refused. Anyone try this treatment? Any terrible side effects? Scared. Maria.

Hi BruceHEAL Collaborative hosts workshops with churches to around the country to educate lay audiences about topics like bone health and osteoporosis because these types of deep content-driven programs are not being held in communities of color. We always try to have a patient who can speak about their personal journey with a chronic condition, when and how they got screened, their challenges getting a diagnosis/misdiagnosis, treatment options, prevention, survivorship, and mental health support. We always have a local specialist from a hospital, a social worker, a caregiver. Bone health has been difficult. We can’t find anyone.

Thank you.

I have had one infusion of 400mg Reclast a long time ago, no more. I tolerated it ok. I continued then with Alendronate I do know most important is that it has to be infused slowly. I asked for that. I had no kidney problems. You have to have your Calcium and Parathyroid measured after, that changes temporarily. One infusion improved my values in my spine a lot, so that was really positive. I had not researched this drug prior to taking it, nor, as I said earlier, did I know, that from that time forward, no dentist would want to pull a tooth anymore in my mouth, even 9 years later. Because of the dental aspect alone I would not take it again. Later, I read patients who had many infusions are the ones who seem to have significant problems.

Thanks. He wanted me to have one infusion a year for 4 years. Did you say you just quit after your first infusion? Did you then switch to a different med? Maria.

My endocrinologist wants me to start Evenity as my OP (osteoporosis) became severe in just under one year in my hip. I’m really afraid of the severe side effects also. I’m at high risk for the jaw fracture because I have 3 of the 6 conditions listed for the high risk category. Wish I could find out the stats for percentage of patients that have had a heart attack or stroke or even a jaw fracture. I read studies and there were percentages for all the SE that occurred except these three listed above. Does anyone know these numbers?? Very frightening. Hard to decide what to do.@