Monitoring Testing for Tymlos

Posted by CathyF31 @cathyf31, Apr 14 1:29pm

To All on Tymlos Injections: For routine monitoring while on daily Tymlos injections, does your provider order both blood and 24-hr urine tests? Typically, how often is your testing performed?

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paulipiot | @paulipiot | Apr 17 1:08pm

I was tested before Tymlos and again after 6 months.

CathyF31 | @cathyf31 | Apr 17 1:47pm

In reply to @paulipiot "I was tested before Tymlos and again after 6 months." + (show)

@paulipiot Blood and 24-hr urine testing?

vixstermoves | @vixstermoves | Apr 18 7:48am

In reply to @cathyf31 "@paulipiot Blood and 24-hr urine testing?" + (show)

@cathyf31
Yes, for me blood and urine testing every six months.
two numbers go wacky because Tymlos mimics the parathyroid. The blood test results- wacky PTH PARATHYROID HORMONE and ALKALINE PHOSPHATASE. These results were out of range. I personally had the oncologist confirm with mass general osteoporosis expert. So, all was fine. It will be interesting to see what my blood work will be like six months - year after finishing Tymlos.

But definitely check with your own healthcare provider.

CathyF31 | @cathyf31 | Apr 18 8:55am

In reply to @vixstermoves "@cathyf31 Yes, for me blood and urine testing every six months. two numbers go wacky because..." + (show)

@vixstermoves Thank you. I appreciate your feedback. I am being tested regularly (likely due to side effects that I'm dealing with). Best wishes!

jsakamoto | @jsakamoto | Apr 19 6:46pm

In reply to @cathyf31 "@vixstermoves Thank you. I appreciate your feedback. I am being tested regularly (likely due to side..." + (show)

@cathyf31
Please share the side effects that you are experiencing from Tymlos?

CathyF31 | @cathyf31 | Apr 19 7:41pm

In reply to @jsakamoto "@cathyf31 Please share the side effects that you are experiencing from Tymlos?" + (show)

@jsakamoto Understand that I have complicating neuro and ortho issues that likely enhance my reaction to Tymlos (and other meds), so take the following with a grain of salt....although very real for me:

Lower limb & finger swelling; significant stomach distention; nause; headaches, dizziness; fatigue; low energy; lower limb bone pain; night sweats; sleep disturbances; strong tingling/crawling on shin; significant night-time ankle pain; nickel-sized injection site welts; femur walking pain & coordination.

CathyF31 | @cathyf31 | Apr 19 8:44pm

In reply to @jsakamoto "@cathyf31 Please share the side effects that you are experiencing from Tymlos?" + (show)

@jsakamoto However, reducing to a half dose at 40 mcg (4 clicks) significantly helped all of the side effects, except the injection site welts started after doing so. I was at half a dose for 10 days and I increased by one click / 10 mcg tonight. Hoping that there is no change with the side effects.