You are very lucky to have such a conscientious doc. I have an endo and a rheumatologist, and neither has ever mentioned bone markers or suggested checking how well a drug was working after I started it. They rely simply on DEXA results... useless if you've just about finished a time-limited course of medication. Glad to know about this and will be checking in the future!
BTW, my endo is pushing me to use Prolia after the Tymlos. When I questioned her about increased fracture risk if Prolia is discontinued, she said yes, absolutely, but I'd start a bisphosphinate (likely Reclast) if I had to stop the Prolia. Is your doc suggesting a bisphosphinate after Tymlos primarily because you don't want to take Prolia?
Actually, my endocrinologist said she did not recommend Prolia because of the rebound when you stop using it (as you pointed out, the increased fracture risk). Hence, the only option seems to be bisphosphonates of one kind or another. Somewhere I posted a survey I found showing that cases of jaw necrosis occurred (in the sample the researchers looked at) 2 or more years after starting Reclast, but 6 or more years after starting Fosamax. So I wanted to do Fosamax. My endocrinologist said that she was fine with that, but did point out that Fosamax is not as fully absorbed as Reclast (which I guess is why docs these days regularly recommend Reclast). So I was thinking of doing Reclast for one year, and then Fosamax the following year. We'll see. I'll also talk with my rheumatologist in June.
A part of me is hoping they come up with a better medication by the time I have to end Tymlos!! 🙂
For those of us with less bone than the average woman, and less blood as well, since both are a function of size, requesting a reduced dosage of ReClast is not an unreasonable request. There are studies showing that even a 1 mg dose is effective.
Hi, gently, and thanks for your reply. I have to admit, though, it is over my head. I am going to have to do more reading on P1NP & CTX in order to understand what you're trying to tell me! 🙂
bayhorse, I aplogize. It's pure failure in my expression.
There are acid producing cell that break down bone. The process leaves a residue in the blood called CTX. The cells that build bone also leave a residue in the blood that we call P1NP.
High numbers of CTX in the blood mean that bone is being dissolved. High P1NP means that new bone is being laid down.
Some medications stop the acid emitting cells. We can see if they are working by measuring bone marker CTX. Other medications work by increasing the bone building cells and are tested by measuring P1NP. https://www.youtube.com/watch?v=eYGkT6OrBk0
Antiresorptives work by blocking the acid emitting cells. Anabolics increase bone building cells.
@drsuefowler ,
I can lower CTX with interludes. It takes a lot of serum labs. I haven't found a physician content with the plan, only a pathologist, so I can't recommend it. The endocrinologist I see orders bone markers every three months, but I need to measure before I stop to know when to stop and when I resume to know the effect. I think three weeks is the ideal break for me. I'll know more after this following year.
I read that it takes 3months for the osteoblasts to replace the bone removed by the osteoclasts.
I'm aiming for an unknown ratio, which might be a little crazy. But even remaining osteoporotic, I don't feel in danger of fracturing and so have no hesitation about the interludes.
And I feel happy that the physicians aren't willing to endorse what could turn out to be a risk, but sad that everyone is prescribing these new medications.
I don't feel different on or off of Forteo. Sheer luck, I haven't experienced side effects.
I'd be curious if your physicians might approve a three week test.
@drsuefowler ,
I can lower CTX with interludes. It takes a lot of serum labs. I haven't found a physician content with the plan, only a pathologist, so I can't recommend it. The endocrinologist I see orders bone markers every three months, but I need to measure before I stop to know when to stop and when I resume to know the effect. I think three weeks is the ideal break for me. I'll know more after this following year.
I read that it takes 3months for the osteoblasts to replace the bone removed by the osteoclasts.
I'm aiming for an unknown ratio, which might be a little crazy. But even remaining osteoporotic, I don't feel in danger of fracturing and so have no hesitation about the interludes.
And I feel happy that the physicians aren't willing to endorse what could turn out to be a risk, but sad that everyone is prescribing these new medications.
I don't feel different on or off of Forteo. Sheer luck, I haven't experienced side effects.
I'd be curious if your physicians might approve a three week test.
Thanks @gently. That is very interesting. I will ask my endo, but I have to
wait until May. I will be traveling for 4 days and was considering not
taking the med just for convenience. It probably wouldn't matter.
bayhorse, I aplogize. It's pure failure in my expression.
There are acid producing cell that break down bone. The process leaves a residue in the blood called CTX. The cells that build bone also leave a residue in the blood that we call P1NP.
High numbers of CTX in the blood mean that bone is being dissolved. High P1NP means that new bone is being laid down.
Some medications stop the acid emitting cells. We can see if they are working by measuring bone marker CTX. Other medications work by increasing the bone building cells and are tested by measuring P1NP. https://www.youtube.com/watch?v=eYGkT6OrBk0
Antiresorptives work by blocking the acid emitting cells. Anabolics increase bone building cells.
I'm in the same boat...disappointing results and never any mention of bone markers by rheum or endo - just saw mentions of it on this forum. Neither advises more time on tymlos or starting forteo- they only suggest a bisphosphenate or Prolia (no way on the latter!)
Frankly no one I consult really gives helpful guidance - they just list all the available treatment options and say it's up to me. I can get THAT from Dr. Google.
Leaning towards a 1x week bisphosphate for a couple of years.
Hi, @katwhisperer: I'm having the same experience you are -- none of my physicians really giving helpful guidance, just telling me it's up to me to decide. I can't take the oral bisphosphenates because I have esophagitis, so would have to go on Reclast. And am as hesitant about that as I am about any of the others. Wishing both for wisdom and good luck!:-)
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Actually, my endocrinologist said she did not recommend Prolia because of the rebound when you stop using it (as you pointed out, the increased fracture risk). Hence, the only option seems to be bisphosphonates of one kind or another. Somewhere I posted a survey I found showing that cases of jaw necrosis occurred (in the sample the researchers looked at) 2 or more years after starting Reclast, but 6 or more years after starting Fosamax. So I wanted to do Fosamax. My endocrinologist said that she was fine with that, but did point out that Fosamax is not as fully absorbed as Reclast (which I guess is why docs these days regularly recommend Reclast). So I was thinking of doing Reclast for one year, and then Fosamax the following year. We'll see. I'll also talk with my rheumatologist in June.
A part of me is hoping they come up with a better medication by the time I have to end Tymlos!! 🙂
For those of us with less bone than the average woman, and less blood as well, since both are a function of size, requesting a reduced dosage of ReClast is not an unreasonable request. There are studies showing that even a 1 mg dose is effective.
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2 Reactionsbayhorse, I aplogize. It's pure failure in my expression.
There are acid producing cell that break down bone. The process leaves a residue in the blood called CTX. The cells that build bone also leave a residue in the blood that we call P1NP.
High numbers of CTX in the blood mean that bone is being dissolved. High P1NP means that new bone is being laid down.
Some medications stop the acid emitting cells. We can see if they are working by measuring bone marker CTX. Other medications work by increasing the bone building cells and are tested by measuring P1NP.
https://www.youtube.com/watch?v=eYGkT6OrBk0
Antiresorptives work by blocking the acid emitting cells. Anabolics increase bone building cells.
-
Like -
Helpful -
Hug
2 Reactions@drsuefowler ,
I can lower CTX with interludes. It takes a lot of serum labs. I haven't found a physician content with the plan, only a pathologist, so I can't recommend it. The endocrinologist I see orders bone markers every three months, but I need to measure before I stop to know when to stop and when I resume to know the effect. I think three weeks is the ideal break for me. I'll know more after this following year.
I read that it takes 3months for the osteoblasts to replace the bone removed by the osteoclasts.
I'm aiming for an unknown ratio, which might be a little crazy. But even remaining osteoporotic, I don't feel in danger of fracturing and so have no hesitation about the interludes.
And I feel happy that the physicians aren't willing to endorse what could turn out to be a risk, but sad that everyone is prescribing these new medications.
I don't feel different on or off of Forteo. Sheer luck, I haven't experienced side effects.
I'd be curious if your physicians might approve a three week test.
Thanks @gently. That is very interesting. I will ask my endo, but I have to
wait until May. I will be traveling for 4 days and was considering not
taking the med just for convenience. It probably wouldn't matter.
@gently, thank you so much for this very clear explanation. I do appreciate!
Hi, @katwhisperer: I'm having the same experience you are -- none of my physicians really giving helpful guidance, just telling me it's up to me to decide. I can't take the oral bisphosphenates because I have esophagitis, so would have to go on Reclast. And am as hesitant about that as I am about any of the others. Wishing both for wisdom and good luck!:-)
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Like -
Helpful -
Hug
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