Evenity treatment and its effectiveness

@gretch19

I'm reposting this comment by @hopefullibrarian so we can all understand a little more on the usefulness of bone markers. By your posting the 2nd P1NP it shows you are on the right path 🥰 . I would be surprised that Dr McC did not recognize this. Please keep us posted. This is crucial & so helpful for all of us in understanding the OP journey, tysm.

🤗
https://connect.mayoclinic.org/comment/1068569/

I was pretty nervous about it and my doctor urged me to get it in the abdomen which was the best recommendation. Just a little prick two times, a bit of tenderness afterwards which goes away next day or two. I have had no noticeable side effects and have gotten six out of 12 injections

That’s not true that your markets would be normal .

With the huge, side of the barn, values for "normal", it would be very difficult for hers to not fall in those ranges.

It is a huge range but how would you know unless you do them . All I know is that I did mine before Evenity and have seen very good values as a result of the Evenity .

ripley,
Neither my endocrinologist nor my rheumatologist ordered bone markers. I asked the rheumatologist to order them. He looked up the tests right in front of me and we discussed. He said, “Sure. No problem.” So, he did order them, I received results, no doc has called me to discuss. I also had a dexa a few weeks ago and no doc has called to discuss that.
Thursday, I am having a Reclast infusion in the rheumatologist’s office. While there, I plan to inquire and complain.

I was just scheduled with my endocrinologist for September. The appointment is one year after my first appointment with the endocrinologist and I have a bone density scan scheduled in September too. So, my endocrinologist will presumably be looking and comparing my pre- and almost post- (my last injections of Evenity will be in October) bone density.

@ripley I think the statement made by the endo you saw recently was correct and incorrect at the same time. S/he is right since for the majority of people, CTX or P1NP will fall in the "normal" range with rare exceptions. However, if we look at the two bone markers in reference with each other, the picture could be totally different. For example, for two different persons having a same P1NP reading of 50, the person with a high CTX in 600s will be considered an abnormal high turnoverer resulting bone loss, when compared with the other person with a CTX in 300s. After many readings, I think for a treatment naive person, ideally it's best to have multiple baseline btms done in a span of 6-12 months. Then using the average of the readings as a true baseline to "smooth" out variability. If, the anuual dexa scan shows bone loss, then you'd know you are losing bone with this baseline of btms. It's evident that the variability exists among individuals especially with the interference of different medical conditions. This might be the root for the difficulties in interpreting btms. I'm anthusiastic in using btms as a tool and convinced my endo ordering them periodically. Unforturenately btms have not incorporated in original accessement nor in treatment monitoring as a routine, although they were actively used in many clinical trials.

I finished my injections and got a 17% improvement in my spine and smaller percentages in my hips. Now I am going on fosamax once a week so hoping to keep the gain. I had very littel side effects while on Evenity.

@mayblin I too have noticed as I'm sure others have that btms were used in many clinical trials and wondered why that would be if they are not useful in monitoring progress. I also find it curious why it's not a mainstream method of monitoring patient progress in the real world. My rheumatologist doesn't use them and said they "weren't ready for prime time in guiding clinical management." Also that they "were going out of favor." Nevertheless he will order them for me if I want. Although apparently one can order them on their own.