Anyone taken Evenity (romosozumab) for Osteoporosis?

Posted by arlene7 @arlene7, May 27, 2020

Has anyone taken Evenity? I understand it’s only been on the market for a little over a year. I’m hoping it will help with my severe osteoporosis. Any information is helpful.

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windyshores | @windyshores | Nov 15, 2022

In reply to @mbgcx "Thanks for your reply - What is Tymlos and did you get a good result from..." + (show)

Tymlos builds bone using the parathyroid pathway, like Forteo. I am stronger but DEXA isn't until March.

Chris Trout, Volunteer Mentor | @artscaping | Nov 16, 2022

In reply to @jerilk "Just so I'm clear fosamax is a pill? And Prolia is a shot every 6 months" + (show)

@jerik, Good evening. Perhaps I can answer that question for you. Yes, you are correct bout the Fosamax (Alendronate) is a weekly pill and Prolia is a twice-a-year injection.

My own experience was not positive when I went on Prolia after 2 years of daily Tymlos injections. Evidently, the amount of medication in a 6-month injection was just too much for my body to handle. The half-life during which the medication is in your body is 3 months. I was used to a small daily dose with the Tymlos injection.

My Mayo endocrinologist figured this out for me. And now I take Alendronate (Fosamax) every Monday morning. I have no side effects.

Also with Prolia, there can be no breaks or drug holidays because of the danger of fractures.

Good luck with your decision.
Chris

marcd | @marcd | Nov 16, 2022

In reply to @windyshores "Can you have a DEXA and determine whether it might be better to save a whole..." + (show)

Hello Windyshores
I did not see this post, so pardon late response.
As noted above my plan is to do several rounds of Evenity, so not sure what your question means about saving a whole year of Evenity for later.
I have not done Tymlos or Forteo.
The CTX P1NP tests are not covered by insurance, but they can be done upon recommendation by doctor and payment by me.

marcd | @marcd | Nov 16, 2022

In reply to @marcd "My osteoporosis doctor recommended that I continue Evenity for more than one year. The attached study..." + (show)

@marcd

My osteoporosis doctor recommended that I continue Evenity for more than one year. The attached study shows benefit for up to two years.
Following is an update on my use of Evenity for more than one year.
I have now been receiving monthly Evenity for about a year and a half. The side effects (local soreness and a bit fatigue) seem to be a very slight bit more than they were a year ago… but not sure if that is the medication or other factors going on in my life.
In a month or so I plan to arrange for an updated DEXA scan, as well as CTX and P1NP blood tests. (The blood tests give an indication of how the bones will continue to build with continued use of Evenity.)
I will review the results with my doctor. At that point I will decide whether to continue Evenity for another six months. Alternatively, I will pause Evenity and switch over to a bisphosphonate for a period of time – then return to the Evenity treatment.
I am considering Risedronate (Actonel) as the bisphosphonate medication because it works with my longer-term treatment plan.
Here is the explanation: Risedronate (Actonel) does not last very long. My osteoporosis doc says “It detaches quickly from the bone.” That is good from my point of view since I hope to return to Evenity treatment after a period of time. Biphosphonate treatment tends to interfere with the action of Evenity. My hope is that the risedronate/Actonel will help maintain the bone density for a period of time while my CTX and P1NP blood tests show a return to baseline. I will then return to Evenity. Since the Actonel “detaches quickly from the bone” my hope is that the Evenity will be able to work effectively with a fairly short term use of residronate/Actonel
I will appreciate any information from someone who has experience with a course of treatment similar to this or other information that might be useful as I consider this course of treatment.
Thanks!

Jump to this post

After 18 months Evenity I did a DEXA scan to see if positive progress on bone density had occurred. It seems to me the answer is yes. I will post more information after I review the DEXA results with my doc.

linda195072 | @linda195072 | Nov 16, 2022

In reply to @windyshores "@mmbgcx Prolia and Fosamax are different types of drugs, as you probably know. I am going..." + (show)

I take Prolia injections now every 6 months and it’s working. I had infusion of Reclast and had very bad reaction.

dianestanley | @dianestanley | Nov 16, 2022

Has anyone had to have dental surgery while on Evenity? I am aware that a person should not have dental surgery but my crown broke off. I have had a root canal in the past on this tooth. My dentist thought that it would have to come out. I have an appt with an oral surgeon to discuss.

Thanks.

kolika | @kolika | Nov 16, 2022

In reply to @bettersleep68 "Your numbers are almost like mine...I just keep hope they will not drop and maintain ..I..." + (show)

I'm sorry about your numbers if they're close to mine. Once I hit them, I knew it was serious and I needed to do something. These numbers represent a big drop, for me so I don't expect to "maintain" without some type of assistance. As mentioned, I'm getting closer to having all the info I need to make a decision in January. Have you been tested for Hyperparathyroidism? Take care.

kolika | @kolika | Nov 16, 2022

In reply to @artscaping "@jerik, Good evening. Perhaps I can answer that question for you. Yes, you are correct bout..." + (show)

Just curious, Chris, how long do you expect to be on Fosamax weekly pill? Thank you!

bruceandruth1970 | @bruceandruth1970 | Nov 17, 2022

In reply to @dianestanley "Has anyone had to have dental surgery while on Evenity? I am aware that a person..." + (show)

I have the same question regarding dental surgery while on Evenity. Please let me know what the oral surgeon says.
Thank you.

dianestanley | @dianestanley | Nov 17, 2022

In reply to @bruceandruth1970 "I have the same question regarding dental surgery while on Evenity. Please let me know what..." + (show)

I see him on Nov 22. In the Evenity Safety Precautions, it states that Osteonecrosis of the Jaw may occur. Since I can't stand for over five mins at a time, I want to take the risk. From what I have understood from the dentist was that if nothing is done to remove the under the gum situation after my crown broke off, it will probably get infected. He is sending me to the Oral Surgeon to cover all bases.