Tymlos and Elevated Blood Calcium Scores

Posted by wudalife2 - Walt Freese @wudalife2, Jun 8 8:03pm

Has anyone else seen a striking increase in their Blood Calcium scores after taking Tymlos for 18+ months? I recently saw an alarming increase in my blood calcium score, putting me at a much greater risk for a heart attack, or stroke. In re-reading the prescription information for Tymlos, I noted that there’s a section that specifically mentions this occurring in a small percentage of Tymlos users.

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Did you have calcium supplements within 48 hours of the test? Did you do Tymlos before or after the test (assuming it was a blood test). My calcium levels stayed stable (10.3) but I avoided calcium and supplements and di Tymlos after the blood test. If your calcium levels were still high (how high?) I hope your doctor can look into this. Were you still taking Tymlos? Tymlos, I have been told, raises calcium levels for a few hours so I would be interested if this is a chronic issue...

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@windyshores

Did you have calcium supplements within 48 hours of the test? Did you do Tymlos before or after the test (assuming it was a blood test). My calcium levels stayed stable (10.3) but I avoided calcium and supplements and di Tymlos after the blood test. If your calcium levels were still high (how high?) I hope your doctor can look into this. Were you still taking Tymlos? Tymlos, I have been told, raises calcium levels for a few hours so I would be interested if this is a chronic issue...

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I had sky high urine calcium on Tymlos but normal serum calcium.

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@marymj7

I had sky high urine calcium on Tymlos but normal serum calcium.

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I just read in "Great Bones" by McCormick that diuretics are used to flush out excess urine calcium. Did anyone put you on them?

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@windyshores

Did you have calcium supplements within 48 hours of the test? Did you do Tymlos before or after the test (assuming it was a blood test). My calcium levels stayed stable (10.3) but I avoided calcium and supplements and di Tymlos after the blood test. If your calcium levels were still high (how high?) I hope your doctor can look into this. Were you still taking Tymlos? Tymlos, I have been told, raises calcium levels for a few hours so I would be interested if this is a chronic issue...

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Tymlos prescription information highlights high RCA Calcium scores as a Known, Serious Side-Effect in some patients. Nowhere does the prescription information mention that this serious side-effect is temporary in those patients. I did not have a high RCA Calcium score before taking Tymlos. I had been taking Tymlos for 18-24 months before my latest RCA Calcium score, which was above 300! I took Tymlos nightly before bed. My RCA Calcium score was measured on a weekday afternoon, 13 hours after my prior dose of Tymlos, so if its effect on RCA Calcium is short-lived (which is not referenced in any of the drug's literature), it had more than enough time to dissipate. I've never been over-weight, eat a very healthy diet and rotate both cardio and strength training at least 5 days/week. My Bone Specialist should have been monitoring my calcium levels, but didn't. Fortunately, my GP does. High Calcium scores can be present and people often don't know it. In my case, my Blood Pressure was normal and I had a low resting heart rate (in the 40's). My RCA Calcium score put me at a 5X greater risk for a heart attack, or stroke within a 5-year period and the only way I found out was thanks to my first-class GP and concierge physician. I contributed my post in the hope that other people taking Tymlos will make sure that their Bone Specialist monitors their RCA Calcium levels, or will request that their GP do it. I have stopped taking Tymlos and will be following up with my GP to determine when we will want to take my RCA Calcium levels again. My GP has also referred me to a new bone specialist.

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@wudalife2

Tymlos prescription information highlights high RCA Calcium scores as a Known, Serious Side-Effect in some patients. Nowhere does the prescription information mention that this serious side-effect is temporary in those patients. I did not have a high RCA Calcium score before taking Tymlos. I had been taking Tymlos for 18-24 months before my latest RCA Calcium score, which was above 300! I took Tymlos nightly before bed. My RCA Calcium score was measured on a weekday afternoon, 13 hours after my prior dose of Tymlos, so if its effect on RCA Calcium is short-lived (which is not referenced in any of the drug's literature), it had more than enough time to dissipate. I've never been over-weight, eat a very healthy diet and rotate both cardio and strength training at least 5 days/week. My Bone Specialist should have been monitoring my calcium levels, but didn't. Fortunately, my GP does. High Calcium scores can be present and people often don't know it. In my case, my Blood Pressure was normal and I had a low resting heart rate (in the 40's). My RCA Calcium score put me at a 5X greater risk for a heart attack, or stroke within a 5-year period and the only way I found out was thanks to my first-class GP and concierge physician. I contributed my post in the hope that other people taking Tymlos will make sure that their Bone Specialist monitors their RCA Calcium levels, or will request that their GP do it. I have stopped taking Tymlos and will be following up with my GP to determine when we will want to take my RCA Calcium levels again. My GP has also referred me to a new bone specialist.

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@wudalife2 I have seen the high calcium on the side effect list. I asked questions because a few others have posted about this serious side effect and having taken Tymlos myself with no testing, I was curious whether some of the reports of high calcium were from testing right after the injection, or after supplementation with calcium. Clearly neither was true for you.

I am sorry this happened to you! I have had intolerable side effects from every medicine except Tymlos, as far as I know at least. Noone did a urine calcium or a coronary artery calcium level on me during the two years of treatment. My blood calcium was always high normal at 10.3.

What exactly is an RCA calcium score and what is the range/ I get that 300 was high. Do you have treatment for this?

Your post is helpful. Most of us are not getting tested that's for sure.

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@windyshores

I just read in "Great Bones" by McCormick that diuretics are used to flush out excess urine calcium. Did anyone put you on them?

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Thank you for your reply, @windyshores. I am unable to take diuretics, as they lower blood pressure, and my blood pressure and heart rate are very low to begin with. Even a small dose would be risky and possibly result in a fall, or worse, and from when I have read, small doses aren't terribly effective. My base line urine calcium is also high, but nowhere near as high as when I was on Tymlos. My doctor is beginning the approval process for Evenity. She seems to think it will help me in spite of my hypercalciuria. Sure hope so.

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@marymj7

Thank you for your reply, @windyshores. I am unable to take diuretics, as they lower blood pressure, and my blood pressure and heart rate are very low to begin with. Even a small dose would be risky and possibly result in a fall, or worse, and from when I have read, small doses aren't terribly effective. My base line urine calcium is also high, but nowhere near as high as when I was on Tymlos. My doctor is beginning the approval process for Evenity. She seems to think it will help me in spite of my hypercalciuria. Sure hope so.

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@marymj7 with Evenity I was afraid of low calcium! Maybe it will be helpful.

Gosh, there seem to be a fair number of people posting about high calcium testing with Tymlos. Even though it is supposed to be rare. I do think we all might need to be checked for this more thoroughly.

Good luck with Evenity!

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@windyshores

@wudalife2 I have seen the high calcium on the side effect list. I asked questions because a few others have posted about this serious side effect and having taken Tymlos myself with no testing, I was curious whether some of the reports of high calcium were from testing right after the injection, or after supplementation with calcium. Clearly neither was true for you.

I am sorry this happened to you! I have had intolerable side effects from every medicine except Tymlos, as far as I know at least. Noone did a urine calcium or a coronary artery calcium level on me during the two years of treatment. My blood calcium was always high normal at 10.3.

What exactly is an RCA calcium score and what is the range/ I get that 300 was high. Do you have treatment for this?

Your post is helpful. Most of us are not getting tested that's for sure.

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An RCA Calcium Score measures Calcium Plaque in the Right Coronary Artery. A score of 100 to 300 means moderate plaque deposits. It's associated with a relatively high risk of a heart attack or other heart disease over the next 3 to 5 years. A score greater than 300 is a sign of more extensive disease and a higher heart attack risk.

I agree that Tymlos users should be monitored for RCA Calcium levels, given the seriousness of Moderate and especially High levels of RCA Calcium Plaque to an individual's health and longevity. I'm thrilled to hear, though, that Tymlos is working well for you. I'm sorry you had to go through so much time experimenting with meds with awful side effects before you found good results with Tymlos. Now, I'm going to be working with a new Bone Specialist to find an alternative treatment to Tymlos that's effective and has minimal side effects. I'm also under the care of a great GP and an equally great Heart Specialist to hopefully manage my RCA Calcium scores down to a Moderate, or Low Level. I'm not really sure yet how much calcium plague build-up can be reversed with diet, supplements, medicines, or exercise. Time will tell!

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@wudalife2

Tymlos prescription information highlights high RCA Calcium scores as a Known, Serious Side-Effect in some patients. Nowhere does the prescription information mention that this serious side-effect is temporary in those patients. I did not have a high RCA Calcium score before taking Tymlos. I had been taking Tymlos for 18-24 months before my latest RCA Calcium score, which was above 300! I took Tymlos nightly before bed. My RCA Calcium score was measured on a weekday afternoon, 13 hours after my prior dose of Tymlos, so if its effect on RCA Calcium is short-lived (which is not referenced in any of the drug's literature), it had more than enough time to dissipate. I've never been over-weight, eat a very healthy diet and rotate both cardio and strength training at least 5 days/week. My Bone Specialist should have been monitoring my calcium levels, but didn't. Fortunately, my GP does. High Calcium scores can be present and people often don't know it. In my case, my Blood Pressure was normal and I had a low resting heart rate (in the 40's). My RCA Calcium score put me at a 5X greater risk for a heart attack, or stroke within a 5-year period and the only way I found out was thanks to my first-class GP and concierge physician. I contributed my post in the hope that other people taking Tymlos will make sure that their Bone Specialist monitors their RCA Calcium levels, or will request that their GP do it. I have stopped taking Tymlos and will be following up with my GP to determine when we will want to take my RCA Calcium levels again. My GP has also referred me to a new bone specialist.

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RCA is a CT scan of the right coronary artery. A high RCA score would indicate levels of plaque accumulated in the cardiac artery. And is frightening for the risk of stroke and cardiac arrest.
Patients with high urinary calcium and normal serum calcium levels, in the main, are absorbing too much calcium in the intestine. This can happen in between doses of Tymlos because pth makes good use of D3. Pth is in the serum for 4 hours and in between the absorbed calcium is excreted through the kidneys. A person with hypercalicuria and normal serum calcium usually has a good parathyroid gland and is at greatest risk for kidney stones. Prolonged hypercalicuria poses additional risk for kidney function.
It would be unusual to have a second RCA CT so soon after a normal CALC score.
Thank you for the warning that saves others from the risk.
I'm a little confused about which tests you had. If you feel like clarifying, I'd know which test to take to protect myself.

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@gently

RCA is a CT scan of the right coronary artery. A high RCA score would indicate levels of plaque accumulated in the cardiac artery. And is frightening for the risk of stroke and cardiac arrest.
Patients with high urinary calcium and normal serum calcium levels, in the main, are absorbing too much calcium in the intestine. This can happen in between doses of Tymlos because pth makes good use of D3. Pth is in the serum for 4 hours and in between the absorbed calcium is excreted through the kidneys. A person with hypercalicuria and normal serum calcium usually has a good parathyroid gland and is at greatest risk for kidney stones. Prolonged hypercalicuria poses additional risk for kidney function.
It would be unusual to have a second RCA CT so soon after a normal CALC score.
Thank you for the warning that saves others from the risk.
I'm a little confused about which tests you had. If you feel like clarifying, I'd know which test to take to protect myself.

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We are all balancing risks and benefits constantly. It's tough. The need of one medical issue contradicts the need of another medical issue. Good luck @wudalife2 with reversing this problem and thanks again for posting about it.

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