Tymlos and Elevated Blood Calcium Scores

Hi @8fish. My GP has referred me to a new endo (mine is retiring), but I've put off seeing him. I'm coming up on my annual physical in two weeks, so I'm sure that I'll soon learn from my GP what my Dexa shows. (The physicals are very thorough.) If there's been any further deterioration, I'll start with my new endo and follow his recommendations. I know that my behavior isn't logical, but I've also been dealing with two more serious diagnoses in the past year. I don't think I was ready for one more new doctor.

I'm thrilled to hear about the progress you made on Tymlos and I'm sorry you had to stop it. Thank you for sharing about the one year break you have to take before starting Evinity. I hope that your Alendronate successfully maintains the progress you made on Tymlos until you can start Evinity. In my case, since I've taken a year off anyway, I may be able to start Evinity right away, if my upcoming Dexa isn't great. I wouldn't know that if it wasn't for you!

Wishing you continued good results. Thank you so much for your post!

Hi @wudalife2 and @8fish. I was on Tymlos for just shy of 3 months and started getting terrible leg cramps, aches. I just got the bad news that it may be the Tymlos so I have to stop and wait a week. If the aches go away, then we know it was that and my doc suggested I should switch to Forento. If the aches are still happening, then she wants me to test (I'm guessing for high calcium). Either way, looks like Tymlos isn't for me. Now I need to go back and argue to have calcium level tested regardless. This is all so scary.

Hi @windyshores!

My RCA calcium score came from a specialized CT scan of my heart. Unfortunately, this scan is an out-of-pocket expense for anyone on Medicare at this time, though the cost comes down considerably if it’s done at a local Imaging practice vs. a Hospital. (Two physician friends tipped me off to this.).

My RCA Calcium score was high enough to calcify my aortic valve and create some plaque buildup in my arteries. I was immediately put on a high-protein, low-carb diet and am now under the care of a very good cardiologist. I’m also now taking a more potent combination of two blood pressure medications and the dosage level of my statin has been doubled.

I know that Tymlos lists higher calcium levels as a side-effect, but I wish they would recommend periodic monitoring of RCA Calcium levels, especially for people who are already being treated for high blood pressure.

Good luck reducing your calcium levels! I’m doing my best, under the care of my GP and Cardiologist, to accomplish the same thing.

I'm coming late to this discussion and I find it alarming. I have been on Tymlos for nearly two years. I can't have a cardiac calcium CT because I have an implanted pacemaker/defibrillator. My serum calcium six months ago was normal, and my rheumatologist (she is monitoring both my lupus and osteoporosis) checked my urine at about the same time and it was normal. But it sounds like the only way to determine RCA calcium is with the CT scan. Is that correct?

Hi @bayhorse , I’m not a doctor, so I’ll just share what I know as someone who has been through two RCA Calcium CT Scans.

I’ve heard of what may be other tests (or different names of the same test). These include Coronary Calcium CT Scans and Heart CT Calcium Scans. It’s clear, though, that all involve a CTs and aren’t options for you. Have you and your doctor considered a Sonogram? A Sonogram of my heart allowed for the diagnosis of my calcified aortic valve before I ever had an RCA Calcium Test.

One thing that may help allay your concerns is that my GP, who is very thorough, didn’t recommend an RCA Calcium Test until he saw elevated scores in my Blood Calcium levels. After my RCA Calcium CT, he referred me to a cardiologist and put me on a statin prescribed a High Protein/Low Carb Diet. Even with that, I started to have frequent irregular heartbeats and AFibs (Atrial Fibrilations).

In other words, there are other tests and physiological indicators that your doctor can use to assess coronary plaque build-up. I also had a genetic predisposition for coronary plaque, which affected both my grandfathers and my father.

Through my cardiologist, I’ve also worn a heart monitor for two weeks, to get an assessment of any irregularities. The monitor did turn up other concerns for me.

I just want to emphasize, though, that people encountering any heart-related issues while on Tymlos are in the minority. I can’t even say that Tymlos caused the calcification of my aortic valve, or arteries, given my family history. Doctors have successfully diagnosed and treated cardiovascular plaque deposits long before there were RCA Calcium CT’s available.

Wishing you all the best with your Lupus and Osteoporosis. I hope that you can get the right information to hopefully allay any concerns you might have about Tymlos.

I don’t know who to reply to because there are multiple conversations going on. However, the calcium deposits in your arteries take years to develop so a a serum calcium test does not reflect the calcium buildup in your heart arteries. There is a test called LP Little an And diagnosis for coronary artery disease. It is through a diagnosis of something like that or similar that the calcium buildup in your arteries is tested and that is covered by Medicare. Also, my blood calcium labs have also been covered by Medicare. I don’t know why a test that’s” medically “necessitated would not be covered by Medicare. I would call Medicare and discuss it with them and see if you can be reimbursed. Everyone’s calcium levels should’ve been checked before they started their bone medicines. I did not know that and found that out through this group shortly after I started TYMLOS and asked my doctor responsible for administering the bone medicines to order the tests. He did there is a number of tests that should be taken as a baseline before you start. I thought it was terrible that I didn’t get the tests out of hand, however, I learned after further research why a lot of the qualified doctors don’t use them because they’re not necessarily determinative.

Thank you so much for your thoughtful reply. It did help allay my fears. My cardiologist had ordered a nuclear stress test last year to determine how well blood was moving, and even though I have a 20 percent blockage in one artery, the test came out within normal parameters. He felt that since blood was moving well, there was no need to check further where calcifications & blockages were concerned. I just accepted his word on this, but I got very worried this week when I saw the posts about Tymlos, because at the time of the visit I was unaware that the drug could affect RCA calcium levels. I wonder now whether I should talk to him about the Tymlos since I've been on it for yet another year, but truth is, I'd hate to repeat that stress test. It was one of the worst I've ever had to undergo!

Hi @bayhorse ,

I always think it's a good idea to share the medications you're taking with your doctors, as well as any possible side-effects that might affect your treatment. Cardiologists have a lot of technology at their disposal besides MRI's and Stress Tests. EKG's and a wearing a heart monitor for two weeks gave my cardiologist the most actionable results. Odds are that your cardiovascular system is functioning well. I'm sending prayers and good wishes your way, whatever you decide.