1. < Osteoporosis & Bone Health

CTX Testing Question

Posted by beanieone @beanieone, Jul 18 1:28pm

All,

I asked my new doc about having a CTX done since I am entering the post-Evenity (and Tymlos) phase of my treatment plan. Since then, I’ve had a battery of blood tests mostly because I think the doc is trying to find a reason as to why I have OP (blood issues??) and to make sure it’s safe for me to have another Reclast infusion.

So, here’s the question, oh knowledgeable and faithful friends . . . what would the blood testing be called for the CTX or what would I look for in the results - I can’t find anything on the patient portal and the once completed, the names of the bloodwork I’ve completed disappear. In the results, I don’t see any kind of “value” that looks like one I should have from CTX. Is there a possibility that CTX testing takes more than a few days to “incubate”?

I messaged the doc and quickly received a response from a member of his team who said all bloodwork was complete. She didn’t mention the CTX and I don’t want to continue to message her. If nothing else, I can wait for the infusion center to call and I can perhaps ask them. And, once I have a date for the infusion, I can message the doc again to ask about having the CTX done.

Please help! Thanks!

Cheers!

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windyshores | @windyshores | Jul 21 8:09pm
In reply to @beanieone "Hi @windyshores I did several Reclast infusions as part of early treatment beginning in 2011 through..." + (show)
@beanieone

Hi @windyshores

I did several Reclast infusions as part of early treatment beginning in 2011 through 2014 or 2015 (records aren’t clear, wait, what!?). After a five/six year holiday, I had two more infusions 2020 and 2021, all without incident. The doc now says that my infusion will be given over a span of about an hour and I am willing to drive over 150 miles round trip to make sure I have the best experience possible.

I’ve had four total compression frax - L1, L3, L4 and T12. I knew about the first three, although I only had severe pain with the first . . . and I don’t know which one was first. After the T12, my doc prescribed Tymlos which I tried for about 8-1/2 months with devastating consequences. Next stop: Evenity which I just finished at the end of June. I am currently waiting for the infusion team to set a date/time for the Reclast infusion.

You are correct about flying a plane in the dark!!! Dangerous situation, no good flight plan. 😳 Quite honestly, Prolia scares the bejeepers out of me; it holds OP at bay but it can come roaring back with a vengeance if meds are discontinued.

I’m sorry you’re having so much trouble from your frax - they can be pretty debilitating. Unfortunately, it’s difficult to tell whether our aches and pains are the result of injury or our meds. Best wishes to you, windy!

Cheers!

Jump to this post

@beanieone I am currently wondering if Reclast is causing my spinal pain. I hate to say it and don't want to dissuade anyone else from trying it! (I was good on Tymlos)

Oops sorry folks for the tangent!

REPLY
esb13 | @esb13 | Jul 22 8:06am
In reply to @beanieone "Hi @windyshores I did several Reclast infusions as part of early treatment beginning in 2011 through..." + (show)
@beanieone

Hi @windyshores

I did several Reclast infusions as part of early treatment beginning in 2011 through 2014 or 2015 (records aren’t clear, wait, what!?). After a five/six year holiday, I had two more infusions 2020 and 2021, all without incident. The doc now says that my infusion will be given over a span of about an hour and I am willing to drive over 150 miles round trip to make sure I have the best experience possible.

I’ve had four total compression frax - L1, L3, L4 and T12. I knew about the first three, although I only had severe pain with the first . . . and I don’t know which one was first. After the T12, my doc prescribed Tymlos which I tried for about 8-1/2 months with devastating consequences. Next stop: Evenity which I just finished at the end of June. I am currently waiting for the infusion team to set a date/time for the Reclast infusion.

You are correct about flying a plane in the dark!!! Dangerous situation, no good flight plan. 😳 Quite honestly, Prolia scares the bejeepers out of me; it holds OP at bay but it can come roaring back with a vengeance if meds are discontinued.

I’m sorry you’re having so much trouble from your frax - they can be pretty debilitating. Unfortunately, it’s difficult to tell whether our aches and pains are the result of injury or our meds. Best wishes to you, windy!

Cheers!

Jump to this post

Thank you for sharing your journey with this forum! Would you be able to also detail your “devastating Tymlos consequences?” Were those intolerable side effects from the daily injection or worsening OP after the 8 1/2 months? TY!

REPLY
beanieone | @beanieone | Jul 23 8:09am

Hi @esb13

My OP scores improved greatly post-bone-building drugs and I didn’t have any real physical issues prior to starting Tymlos. After stopping Tymlos, the issues resolved within days, so I can aver with pretty complete certainty that it was Tymlos that caused them. The daily injections, although inconvenient, were of no consequence.

The adverse reactions to Tymlos, to name but a few, were constant nausea, pain and tightness in my chest to the point where I couldn’t draw a breath, constant and debilitating pains across my shoulders and collar bone and rapid (100+ bpm) heart rate. I lived on Advil, Tylenol and Ondansetron, however, none of these actually provided any relief. There are other consequences, i.e., many doc visits - pain management, ER, cardiologist, PCP, rheumatologist, gastroenterologist, spinal neurosurgeon, PT, MRI . . .

These are just my experiences and as I swapped out Evenity for Tymlos (after 8-1/2 months), I can’t really say which med worked better at bone building. What works for one may not work for others - Windyshores has had fabulous results with Tymlos but couldn’t tolerate Evenity. Unfortunately it took some time for me to convince my doc that these adversities were caused by Tymlos were not related to my OP or frax. Be your own advocate - if something feels wrong, speak up, loudly!

Happy, Happy, Joy, Joy! Cheers!

REPLY
2 replies
esb13 | @esb13 | Jul 24 3:52pm
In reply to @beanieone "Hi @esb13 My OP scores improved greatly post-bone-building drugs and I didn’t have any real physical..." + (show)
@beanieone

Hi @esb13

My OP scores improved greatly post-bone-building drugs and I didn’t have any real physical issues prior to starting Tymlos. After stopping Tymlos, the issues resolved within days, so I can aver with pretty complete certainty that it was Tymlos that caused them. The daily injections, although inconvenient, were of no consequence.

The adverse reactions to Tymlos, to name but a few, were constant nausea, pain and tightness in my chest to the point where I couldn’t draw a breath, constant and debilitating pains across my shoulders and collar bone and rapid (100+ bpm) heart rate. I lived on Advil, Tylenol and Ondansetron, however, none of these actually provided any relief. There are other consequences, i.e., many doc visits - pain management, ER, cardiologist, PCP, rheumatologist, gastroenterologist, spinal neurosurgeon, PT, MRI . . .

These are just my experiences and as I swapped out Evenity for Tymlos (after 8-1/2 months), I can’t really say which med worked better at bone building. What works for one may not work for others - Windyshores has had fabulous results with Tymlos but couldn’t tolerate Evenity. Unfortunately it took some time for me to convince my doc that these adversities were caused by Tymlos were not related to my OP or frax. Be your own advocate - if something feels wrong, speak up, loudly!

Happy, Happy, Joy, Joy! Cheers!

Jump to this post

Hi! Wow, this sounds like a lot to manage and I am so sorry for your adverse reaction to Tymlos and so glad you were able to find relief once you stopped and started a new regimen.

I hope you continue to improve and feel strong and vibrant!

I've just begun month 3 of Tymlos and so far so good, but of course it's all about the numbers so I won't learn if it's working for me until I have more tests. I have a P1NP after 3 months and a DEXA after 6. Any improvement will be most welcome! My spine is currently at -3.

REPLY
1 reply
hopefullibrarian | @hopefullibrarian | Jul 24 4:18pm
In reply to @beanieone "Hi @esb13 My OP scores improved greatly post-bone-building drugs and I didn’t have any real physical..." + (show)
@beanieone

Hi @esb13

My OP scores improved greatly post-bone-building drugs and I didn’t have any real physical issues prior to starting Tymlos. After stopping Tymlos, the issues resolved within days, so I can aver with pretty complete certainty that it was Tymlos that caused them. The daily injections, although inconvenient, were of no consequence.

The adverse reactions to Tymlos, to name but a few, were constant nausea, pain and tightness in my chest to the point where I couldn’t draw a breath, constant and debilitating pains across my shoulders and collar bone and rapid (100+ bpm) heart rate. I lived on Advil, Tylenol and Ondansetron, however, none of these actually provided any relief. There are other consequences, i.e., many doc visits - pain management, ER, cardiologist, PCP, rheumatologist, gastroenterologist, spinal neurosurgeon, PT, MRI . . .

These are just my experiences and as I swapped out Evenity for Tymlos (after 8-1/2 months), I can’t really say which med worked better at bone building. What works for one may not work for others - Windyshores has had fabulous results with Tymlos but couldn’t tolerate Evenity. Unfortunately it took some time for me to convince my doc that these adversities were caused by Tymlos were not related to my OP or frax. Be your own advocate - if something feels wrong, speak up, loudly!

Happy, Happy, Joy, Joy! Cheers!

Jump to this post

That's such a strong reaction. I don't think I could have endured that for more than a day or two.
Am I understanding correctly that you were on Evenity for 8-1/2 months, then started Tymlos? If so, you're the first person I've heard of who did that sequence of treatment. I wish you knew which worked better for you. It seems to be a big "unknown" as to whether taking Tymlos after Evenity is effective at all. I would hate to think your suffering was all for naught.

REPLY
beanieone | @beanieone | Jul 24 8:38pm

@hopefullibrarian, I did 8-1/2 months of Tymlos and then a full year of Evenity which I completed, without incident, at the end of June. I had excellent DEXA results in my January scan, but sadly, after Tymlos and then five months of Evenity, I don’t know which one had more to do with those results. I wish, in some part, that I knew which med worked for me, but my doc would not order any bone marker tests prior to or during my injections. The only reason I know my T-scores is because I had my regularly scheduled scan in January anyway 🧐 . . .

Tomorrow I report for duty to have a Reclast infusion.

I appreciate your thoughts, @hopeful! Cheers!

REPLY
1 reply
beanieone | @beanieone | Jul 24 8:42pm
In reply to @esb13 "Hi! Wow, this sounds like a lot to manage and I am so sorry for your..." + (show)
@esb13

Hi! Wow, this sounds like a lot to manage and I am so sorry for your adverse reaction to Tymlos and so glad you were able to find relief once you stopped and started a new regimen.

I hope you continue to improve and feel strong and vibrant!

I've just begun month 3 of Tymlos and so far so good, but of course it's all about the numbers so I won't learn if it's working for me until I have more tests. I have a P1NP after 3 months and a DEXA after 6. Any improvement will be most welcome! My spine is currently at -3.

Jump to this post

@esb13, thank you so much for your kind thoughts. It took a minute, but I am feeling much better now.

Best wishes to you as you continue your Tymlos journey to strong bones and good health!

Cheers!

REPLY
hopefullibrarian | @hopefullibrarian | Jul 25 2:22pm
In reply to @beanieone "@hopefullibrarian, I did 8-1/2 months of Tymlos and then a full year of Evenity which I..." + (show)
@beanieone

@hopefullibrarian, I did 8-1/2 months of Tymlos and then a full year of Evenity which I completed, without incident, at the end of June. I had excellent DEXA results in my January scan, but sadly, after Tymlos and then five months of Evenity, I don’t know which one had more to do with those results. I wish, in some part, that I knew which med worked for me, but my doc would not order any bone marker tests prior to or during my injections. The only reason I know my T-scores is because I had my regularly scheduled scan in January anyway 🧐 . . .

Tomorrow I report for duty to have a Reclast infusion.

I appreciate your thoughts, @hopeful! Cheers!

Jump to this post

That seems to be the correct order of things. Bummer not knowing specifically what worked. Best of luck with the infusion. There's a chance I might have the same early next year. Let us know how you go.

REPLY
beanieone | @beanieone | Jul 25 6:50pm

My previous doc wouldn’t order any testing except for a DEXA every two years. For the life of me, I don’t know why - I was interested in baselines and improvements, he was not.

I wasn’t expecting anything different than previous Reclast infusions, and I wasn’t disappointed. My new doc prescribed two Tylenol prophylactically and I agreed to that while I was getting “hooked up”.

I asked the nurse how long the infusion would take and she said about 15 minutes. Wait, what?! I remembered my doc (and some posters here) saying that infusions are now given over the span of about hour. My doc placed the order for a 45-minute drip; the entire infusion took about an hour. The nurse said that typically docs only ask for longer infusion times if there are kidney issues to deal with (I am lucky enough that that’s not an issue). I drank 16 ounces of water in the hour prior to the appointment and another 16 in the hour following.

Yippee, skippee, no more OP-related “jabs” for a year! Wishing you the best outcomes possible! 😬

REPLY
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