Anyone taken Evenity (romosozumab) for Osteoporosis?

Good evening @carols42 and welcome to Connect. I see this is your first post and it is a good one. Welcome. Is your doctor also your primary care provider? I, too, am very allergic to sulfa. The last doctor who didn't understand the impact that sulfa has on me also ignored the chart and I ended up in the ER trying to recover from the itching. I was rolling on the carpet trying to control what was happening to my body.

I think you can actually call Amgen and talk to a medical professional about your situation. The number is 800 772-6436. They might have a recommendation that you can give your doctor. Please report back. I too would like to know what they tell you.

May you be content and at ease.
Chris

I have just taken my fifth dose and am almost half way there! I am enthusiastic that it will be helpful and don’t dwell on the negative possibilities. I also exercise and take calcium and vitamin D supplements.
It is not an easy decision to make but everyone is different and entitled to an opinion. Good Luck!!!!

Good evening @carols42 and welcome to Connect. I see this is your first post and it is a good one. Welcome. Is your doctor also your primary care provider? I, too, am very allergic to sulfa. The last doctor who didn't understand the impact that sulfa has on me also ignored the chart and I ended up in the ER trying to recover from the itching. I was rolling on the carpet trying to control what was happening to my body.

I think you can actually call Amgen and talk to a medical professional about your situation. The number is 800 772-6436. They might have a recommendation that you can give your doctor. Please report back. I too would like to know what they tell you.

May you be content and at ease.
Chris

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.

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 curious why you cannot take Forteo or Tymlos after the radiation.

Did you do chemo or only letrozole? In my case, letrozole worsened my osteoporosis and it could put you over the edge, but I don't think it would cause dramatically worse DEXA scan scores.

I don't understand why you were on Prolia after fractures. Prolia is an anti-resorptive not a bone-builder.

Prolia can actually interfere with progress on later Tymlos, Forteo or Evenity, or at least I have read that. I have 6-7 fractures and I am risking adverse reactions every day with Tymlos. Those of us with a number of fractures have no choice.

Tymlos really helps the spine. Not as much the hip.

If you really cannot have Tymlos or Forteo, the tiny risk of sulfa in Evenity is a reasonable risk. Can you take Benadryl and have an Epi-pen ready? (I don't see any sulfa in the list of inactive ingredients).

I react to polysorbates and that is in Evenity too yet I would not hesitate, given my fractures.

You are in a tough position but I don't think you have any choice: you need a bone builder!

I didn’t have chemo, just Letrozole. My Dexa scan scores greatly worsened 3 years into taking it. I don’t remember why my rheumatologist said you can’t have Forteo or Tymlos after radiation but I see him later today and I’ll ask again.
My fractures started right after my second Prolia shot. I did not have any fractures prior to taking Prolia. No one will say Prolia caused them but they all agree it didn’t help prevent them. Thanks for your feedback.

Prolia contains demosunab? (a chemotherapy drug). Just look on line under Prolia and chemotherapy. I had 2 shots of it and was in constant leg pain and lost a lot of hair. I will NEVER take another shot of it and will never take what the doctor prescribes without doing research on the drug myself. Be careful and good luck! (I have very high risk osteoporosis).