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Mixed results 1 year after Forteo: What are your thoughts?
Osteoporosis & Bone Health | Last Active: Aug 15 2:11pm | Replies (86)Comment receiving replies
the way it was explained to me just now by @windyshores - was TYMLOS, because it is not a biphosphonate, has the opposite effect with the numbers. So the 49 to 90 was GOOD whereas if it was a biphosphonate it would be bad. And I guess my 322 over the 300 is also going in the correct direction. They have already told me I am not doing any reclast until I am off the Tymlos and then I do the reclast once a year for 3 years and then I'm done. (unless new research comes up). I can't do them together because it is not the protocol with the TYMLOS.
I just looked up Lani Simpson. I don't know about her but I am at UCSD a teaching hospital and they really know what they are doing there in the specialty departments. It was explained to me why I will be doing this as the protocol they are recommending. I am on board with it. I grill my endocrinologist and his assistants. Totally.
They work in a team - in a non profit - teaching other doctors to become tomorrow's doctors. I am on Medicare now (before I had military insurance) so I don't worry about the cost. I just make sure I get the BEST there is. I had to fight to get this protocol because its not the first line of medication. I also get to go to the head of the class as I am gluten and lactose-intolerant. (lactose and gluten-free meds are more expensive). Because of my many diagnoses I am always permitted (and willing) to get labs and tests if the doctor finds them helpful.
I have done the DEXAS for 15 years now but without the TBA software analysis - it is no longer helpful because they must test on my wrists. So I went back and forth and settled on UCSD to do the next DEXA. I just have to get in the back of the line is all. 😉
Replies to "the way it was explained to me just now by @windyshores - was TYMLOS, because it..."
@loriesco From your response to me on the bone markers it seems we have misunderstood each other. I'll say what I think might reduce the confusions and then bow out.
1. If your ctx goes up with Reclast or stays the same after an infusion that is generally not good. You are trying to suppress osteoclast activity. Eventually the osteoclast activity will come back up and that is normal. One year between an infusion is an average time that may not be best for everyone but seems to work for most. It may result in more Reclast infusions and side effects than necessary.
2. I was in no way advocating you take Reclast at the same time as Evenity.
I was using Reclast and it's effects on bone markers as examples of a way of thinking.
3. I was not suggesting your doctors were bad or lacking in knowledge. I do not know them. I was just stating that some doctors I have met and many described on these pages are lacking knowledge and critical thinking in these areas. So it behooves us to be diligent. Sounds like you are already doing that.
4. As you say you are confident in your doctors that is great. One less big thing to worry about.
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@loriesco the relationship between P1NP and CTX is complicated. I may not have this right (ask your doctor) but my memory from "Great Bones" and Leder's video is that ideally the two get "uncoupled." As I remember bisphosphonates make both go down and Forteo?Tymlos make both go up. The ideal apparently is to have P1NP go up and CTX go down and there is an ideal "window" for this. (I don't have my copy of "Great Bones" with me but Leder gives a really good explanation of this on YouTube- "Combining and Sequencing Approaches to Osteoporosis." )Leder discusses doing 0-9 months Forteo and with Prolia coinciding for months 3-15 to get this effect and also says that Evenity does the same thing, though the P1NP does go down quickly and it isn't as potent an antiresorptive. I get confused too about "remodeling"! (Of course Prolia would then pose the risk of rebound, which Leder also discusses...)
UCSD hospital is the best! My kid used that hospital and I had my first afib episode treated there. So much research is done in San Diego and they are very progressive in their care. Good luck!