Hypercalcuria on Tymlos

Posted by marymj7 @marymj7, Dec 30, 2023

I just received my 24 hour urine test results-and I have an extreme amount of calcium in my urine. I probably won't hear from my doctor until Tuesday. as this is a holiday weekend. I know this increases my risk of kidney and bladder stones. Has anyone else had this side effect? I don't know if this will mean I have to discontinue the Tymlos?

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

While you wait to talk to your doctor, it might be comforting to know that this can be a common side effect of Tymlos treatment. It's still something to talk with your doctor about.

In a post titled "Tymlos: 7 things you should know" on drugs.com "high calcium levels in urine" is listed as a possible side effect.

You can read the full post here: https://www.drugs.com/tips/tymlos-patient-tips

I hope this is helpful.

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I took 800 mg calcium (supplements, I can't eat dairy, and on Tymlos I took less than the 1200mg recommended and my calcium stayed around 10. It is important not to take calcium 24-48 hours before the test (I forget which!) and also have the blood test before Tymlos. I was told calcium levels go up right after the injection for a couple of hours and then go down.

Not sure if this is relevant for you!

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@windyshores

I took 800 mg calcium (supplements, I can't eat dairy, and on Tymlos I took less than the 1200mg recommended and my calcium stayed around 10. It is important not to take calcium 24-48 hours before the test (I forget which!) and also have the blood test before Tymlos. I was told calcium levels go up right after the injection for a couple of hours and then go down.

Not sure if this is relevant for you!

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why re the drs so reluctnt to reall tlk to people about these drugs possible side effects etc so when something happens people would know what it is such little empathy for a person's suffering

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@proliamistake

why re the drs so reluctnt to reall tlk to people about these drugs possible side effects etc so when something happens people would know what it is such little empathy for a person's suffering

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We all need to tell our doctors, too- and report side effects to the manufacturer and the governmental site MedWatch. I told my doc today about side effects and he said it was the first time he had heard of these specific ones. I can't understand why: I told him they are listed on the drug website! He is sympathetic and nice but...all he had to do was google and he should know in the first place.

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@windyshores

We all need to tell our doctors, too- and report side effects to the manufacturer and the governmental site MedWatch. I told my doc today about side effects and he said it was the first time he had heard of these specific ones. I can't understand why: I told him they are listed on the drug website! He is sympathetic and nice but...all he had to do was google and he should know in the first place.

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I am also curious/concerned about this, as I have a kidney stone already and had one in the past that I will never forget. New to tymlos. My ARNP said if calcium goes high, they will take me off . I was surprised she didn't say for awhile, she said for good.. Just my experience and I begin tomorrow.

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@pluggingaway

I am also curious/concerned about this, as I have a kidney stone already and had one in the past that I will never forget. New to tymlos. My ARNP said if calcium goes high, they will take me off . I was surprised she didn't say for awhile, she said for good.. Just my experience and I begin tomorrow.

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Good luck and hope it works out for you!

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@pluggingaway

I am also curious/concerned about this, as I have a kidney stone already and had one in the past that I will never forget. New to tymlos. My ARNP said if calcium goes high, they will take me off . I was surprised she didn't say for awhile, she said for good.. Just my experience and I begin tomorrow.

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My doctor still hasn't even called me back regarding the sky high calcium in my urine! I have messaged over the portal and called multiple times. I took myself off Tymlos for three days but took a full dose yesterday. I plan to take a reduced dose today. This doctor is apparently too busy to even look at the labs that she ordered. If I have to come off of Tymlos I want to be ready with a replacement drug so I don't lose my gains. My P1NP bone building blood marker has increased by 100 percent in the three months that I have been on Tymlos.

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@marymj7

My doctor still hasn't even called me back regarding the sky high calcium in my urine! I have messaged over the portal and called multiple times. I took myself off Tymlos for three days but took a full dose yesterday. I plan to take a reduced dose today. This doctor is apparently too busy to even look at the labs that she ordered. If I have to come off of Tymlos I want to be ready with a replacement drug so I don't lose my gains. My P1NP bone building blood marker has increased by 100 percent in the three months that I have been on Tymlos.

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I asked about blood markers but she didn't think necessary, ...just get bone dens test , once a year. Do you think this is enough? Each dr. so different. Lauren .

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A nurse from the doctor's office finally called today regarding my extremely excessive urine calcium on Tymlos. She said to either stop the drug or take it every other day. I am planning every other day, but wondering how low I can go on the dose while remaining at least somewhat therapeutic. Anyone know? If I have to stop the Tymlos I want to ready with a relay drug to save any gains I might have. I think I read a study that said the dose needs to be at least 40 in order to be therapeutic.
The nurse is going to schedule me for a renal ultrasound to look for kidney stones and I have telehealth visit with the doctor on the 16th. Someone asked me to post my CTX score: 419. That's after three months on Tymlos. My baseline was 436, but I was nine weeks out from a moderate lumbar fracture, so I don't know if the baseline is very accurate. My P1NP has increased 100%.

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@marymj7

A nurse from the doctor's office finally called today regarding my extremely excessive urine calcium on Tymlos. She said to either stop the drug or take it every other day. I am planning every other day, but wondering how low I can go on the dose while remaining at least somewhat therapeutic. Anyone know? If I have to stop the Tymlos I want to ready with a relay drug to save any gains I might have. I think I read a study that said the dose needs to be at least 40 in order to be therapeutic.
The nurse is going to schedule me for a renal ultrasound to look for kidney stones and I have telehealth visit with the doctor on the 16th. Someone asked me to post my CTX score: 419. That's after three months on Tymlos. My baseline was 436, but I was nine weeks out from a moderate lumbar fracture, so I don't know if the baseline is very accurate. My P1NP has increased 100%.

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Yesterday I talked with a CVS pharmacist as my insurance company and my doctor unknown to me had issues with paper work. This means I couldn't get this month's Tymlos . So I had two questions: 1) would I experience any side effects for stopping the drug ,CVS response was No! and so far that is very true. 2) Would would happen long term to the dosages I'd already taken? The response was that Tymlos would just continue where it left off. Hope this helps you.

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