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DiscussionAnyone taken Evenity (romosozumab) for Osteoporosis?
Osteoporosis & Bone Health | Last Active: 4 days ago | Replies (1363)Comment receiving replies
Replies to "Good evening @carols42 and welcome to Connect. I see this is your first post and it..."
i am also very allergic to sulfa. there are too many doctors that are incompetent if you ask me as they have also tried pushing narcotics for pain and narcotics cause many adverse reactions on me. the sulfa is scary as I go into anaphylactic shock. I wish doctors were more attentive than just focusing on their agenda.
Sorry for the delay in response but I did call Amgen twice since my post. The first person I spoke to about the possibility of Evenity containing sulfa basically said Evenity has never been tested for the presence of sulfonamides. She also said the raw materials used in the inactive ingredients in Evenity could vary according to availability. Sulfa is not listed as an ingredient in Evenity. That is the short answer. She never gave me a yes or no answer so after a few days I decided to call again.
This time I spoke to a pharmacist who read all of the ingredients to me and gave a similar but more detailed answer. He said the active ingredient in Evenity is a protein which is not expected to contain sulfa. There are also several inactive ingredients in Evenity. Due to the raw materials used to make the inactive ingredients there could be trace amounts of sulfonamides present. He emphasized “trace amounts” depending upon the raw materials used. My understanding of this is there could be trace amounts of sulfonamides present in Evenity depending upon which raw materials were used. He advised me to discuss this with my doctor. I can only assume this can happen with other drugs as well. I see my rheumatologist tomorrow to make the big decision.
I had been on Prolia for 3 years and had a total of 6 injections. I also had 4 compression fractures while on Prolia which I let heal naturally. I stopped Prolia after the 6th shot so I could have minor dental surgery. I had another compression fracture almost immediately and this time it was much worse. I was referred to a neurosurgeon and I had 4 kyphoplasties performed to fix the fractures. I was told to suspend the Prolia by my surgeon until after my procedure. While recovering from surgery I had 4 more compression fractures probably due to stopping Prolia but I had no choice in the matter. I had 4 more kyphoplasties to repair the new fractures and now it’s time to get back on something for my osteoporosis.
I reported all of this to Amgen and the pharmacist suggested that maybe Prolia wasn’t the best choice for me. I was told by my rheumatologist that since I had brachytherapy radiation for breast cancer 8 years ago I could not take Forteo or Tymlos. Evenity is probably my best option right now but is a really hard decision to make.
I have been told by 2 doctors that the Letrozole I took for 5 years for my bout of breast cancer most likely caused my osteoporosis. My surgeon said that the spine does not respond to osteoporosis drugs as well as other bones in your body when chemo meds are the main cause of your osteoporosis. I feel like I’m caught between a rock and a hard place but I have to do something before things get worse.
I am very interested in the response from the company as well.