Tymlos and Elevated Blood Calcium Scores

The Active phase three trial is kind of interesting regarding the kidney issue. https://www.tandfonline.com/doi/epdf/10.1080/03007995.2019.1656955?needAccess=true

@windyshores, I, too, will be concerned about low serum calcium on Evenity. I wish Evenity would decrease my urine calcium, but the two don’t seem to be connected-my serum calcium remained normal on Tymlos.

The connection, or lack thereof, between serum and urine calcium is concerning since many of us are not getting our urine tested! Is there any info on whether Evenity lowers urine calcium? Is there treatment (diuretic?). Does D3 increase urine calcium? I have a lot of questions but at this point I am off both Tymlos and Evenity so this concern is for others! Some on this thread seem to know about this issue of urine calcium and I hope to learn more.

Thanks for posting that study @gently. Reassuring though it does suggest monitoring!

I have asked my endocrinologist over and over if my hypercalciuria will blunt the effect of Evenity, and she really can't answer. She just thinks Evenity "will still help." I found out too late that everyone should have a 24 hour urine calcium test before starting Tymlos, as Hypercalciuria is a known side effect of the drug since it stimulates the parathyroid. I switched doctors and the current one did the urine calcium 3 months into Tymlos and my number was a whopping 518. At baseline, after stopping Tymlos, it's 273. Still too high-not terribly so, but it gives me the diagnosis of Idiopathic Hypercalciuria. I hope everyone is at least getting their parathyroid checked before starting Tymlos or Forteo. I always feel like I have to be my own doctor, and it's stressful.

Thanks so much @wudalife2 for posting! I have been taking 40mcg of Tymlos for 7 months. My 24 hour urine test showed a high calcium value of 338 (range is 35-250). I did not stop calcium during the test. My blood calcium level was 95 and I had stopped calcium supplements for at least 48 hours before that test. Both my Endo and my primary care physician said that there was no problem. My kidneys were doing what they are supposed to do. Don't they even read the Tymlos literature?

I was still concerned and made an appointment with a PA at another endocrinologist's office. She was alarmed about the high calcium in my urine. She said that they usually take people off Tymlos for high calcium because it can cause kidney stones. She wanted to put me on Prolia and I was not interested. Then she said since I have a broken foot that is not healing and have broken so many bones recently, I need a anabolic. She wants me to go on a low calcium diet with no supplements for a month and have another test. I worry about a low calcium diet, when they recommend 1200 mg a day. I have been counting the amount that I get in food. My Endo wanted me to take 500mg of supplemental calcium, but I am trying to get about 1000 mg of calcium from food. I am very confused about how much calcium I should be getting while on Tymlos.

I have a telehealth appointment with the endocrinologist who supervises the PA after I have the second 24 hour urine test. Hopefully, the results will be better without supplements.

@drsufowler I noticed a study on Evenity where people took 500mg calcium. Maybe you could aim for 500mg from food only as a middle ground so to speak!

Thanks @windyshores. That's a good idea.

In my experience, we can't count on our Bone Specialists, or GP's to know about the serious risk of Tymlos to Coronary Calcium Scores in a small percentage of patients. If I hadn't re-read the Tymlos literature to check the side effects, I know that my former Bone Specialist would not have recommend I stop taking Tymlos. I also believe that my GP would have continued to treat my elevated RCA Calcium levels as if it were a dietary issue. (I was already at my ideal weight and was already eating a very healthy diet when my Calcium score shot up into the 300's!) I believe that the prudent thing to do is for every doctor prescribing Tymlos to regularly monitor Calcium scores for at least the first 24 months, when starting a patient of this medication. The reason is that, if the Calcium scores skyrocket, there are no current medical means to reverse the Calcium deposits, short of stents and/or valve replacements. I should note that I am basing this on my own research and am not a medical professional. One thing my experience has taught me, though, is that we cannot count on even highly respected doctors to stay current on the serious side effects of all medications, even if they prescribe them.

I'm so sorry to hear about your broken bones and understand how your doctor's advice to reduce your calcium intake via nutritional supplements can be confusing. I was told by my GP not to take calcium supplements, so I really can't offer any personal experiences that might be helpful to you. I'm sending good energy and prayers, though, that whatever you end up doing results in stronger bones and significantly reduces the risks of any future breaks.