Evenity and Cardio Warning? how significant?

I have had no heart issues, a relatively good cardiac calcium score, no diabetes, high blood pressure, stable bronchiectisis. I had a terrible reaction to Evenity. The target in Evenity is Sclerostin. That protein is present in my lungs. I suspect, but can not prove that my reaction was because of the effect of Evenity on my lungs. If one has a bad heart, I'd expect that any lung damage would cause more heart problems. Please see attached for scholarly articles.

Thank you for the sholarly articles and taking the time to respond. I am so sorry that you unfortuantley expereinced a severe reaction. This must be scary. Medications effect many different areas of the body - and we are each so different in our vulnerabilities. I send postive energy that you can restore a stable balance in the lungs and find a medication that can help your bones. I dont find any meds that are without issues.... I spent 2 years on tymlos only to find that my foot bones have worsened. TYmlos/Forteo can weaken cortical bone. I struggled with bilateral foot stress fractures for many months. Tymlos had serious side effects for me - heart palpations and stomach pain. I pray that we each find what is best for our bodies with the least harm. Be postive and look for the light.

Oh, my, thank you for sending such kind energy. I didn't realize that Tymlos/Forteo could weaken cortical bone. I do hope that you sent in an adverse event report listing all your reactions. It's important for each of us to document problems for the FDA. https://www.accessdata.fda.gov/scripts/medwatch/index.cfm?action=reporting.home

Thank you for the link. My situation is very special. PTH hormones effect primairily trabecular bone. The spine is made up of more trabecualar vs cortical. So whereas my spine had large improvement, the cortical areas did decline. My feet , already serverely compromised, could not withstand deterioation of any cortical strength ( decline in cortical porosity) .
It is possible that the new bone created by the PTH will eventually 'stenghten/ mineralize' . It is also poosible that it would have better for me, to get off the PTH at 18 months, rather than staying on the entire 24 months. However I was having bonemarkers checked to reduce risk of decline and try to ensure I was still in a safe zone.
Again my best to you on your recovery. God bless.

@dmshope I already had been seeing an excellent cardiologist / functional medicine doctor for a number of years when I was deciding to take Evenity. So I talked to him about Evenity and he just referred to my previous testing to say that I had no indications of elevated risk of CVD. He did not have knowledge of Evenity but gave me assurance that I had no special issues of concern.
I took Evenity for a year with no side effects worth mentioning and terrific gains in my spine and slight gains in my hips.
Prior testing with the cardiologist included stress echocardiogram, electrocardiogram, complete lung function testing (I forget what that was called), extensive blood work (Boston Heart's extensive blood testing), coronary calcium scans and carotid ultrasounds. The test results were not perfect but reasonably good.

I had done all that because I was clearly getting more winded than anyone else while playing pickleball. We finally decided it was because I was playing more intensely than anyone else anywhere near my age. I was running all over the court after balls that most others would not even try to return. I was in my late sixties at that time. Also I thought I could withstand the heat like I could when I was a kid. So I didn't get the testing done for Evenity but I'd already had it done, and that made it clear there were no red flags in the CVD area for me.

I think Evenity is in general one of the safest osteo meds. I'm not denying that there is risk but generally I think it's maybe the safest and it is clearly the most effective at building bone. Best of luck to you.

Thank you for sharing your story and for your postive support. I feel that Evenity is my best option and the wodow of opportunity must be taken into consideration..

May you conitnue to recieve what you need for your recovery and strength - and continuation of pickleball which is a favorite amognst many!

hmb72,
sclerostin's activity in the body has been largely unstudied. Since Evenity works by blocking sclerostin, I wish that more studies had been done before the medication was approved. As it is Evenity is a real-world trial, without financial compensation for the participants. Because it is an uncontrolled trial, the results may not become apparent for ten to twenty years.
Evenity may turn out to be a wonder medication lessening the incidence of incidence of insulin resistance, controlling fat deposition.
But Evenity's manufacturer, Amgen, also brought us Prolia.
I wish that you hadn't been a part of this experiment And hope that restoring sclerostin to your lungs will heal them.
https://pubmed.ncbi.nlm.nih.gov/35963832/
Thank you for your post.

While Tymlos and Forteo can reduce bone mineral density that (slight reduction) in density is thought to increase structural integrity.
After osteoblasts become seated in the bone they form a network of communication canals in order to remodel bone according to your activities.
I might also note that the trees in my garden that break limbs in the wind are those with the most dense fiber. The Italian Cyprus can bend almost to the ground without breaking.
You may know the story of the baseball bat company that went out of business making bats out of maple instead of ash. The more dense wood shattered on impact with the ball.
Then there is the new cement https://www.goodgoodgood.co/articles/concrete-stronger-bone-hollow-femur.

These are very good points, thank you. Yet even the best studies cannot take into consideration all the vulnerabilites of the population. So we must be as careful as posssilbe if we have vulnerabilites. and realize we each will expereicne the meds according to our vulnerabilites.
I was on tymlos ( pth) and expereeinced severe stomach pain/digestive issues. 8% of patients get this but few docs say anything about it. I went to a ayurvedic doctor for assessement. Ayurveda veiws digestion through the lens of liver, gallbladder and pancreas. After a few scary months ( I almost could not eat) I learned that PTH hormone receptors are everywhere - everywhere - in the body. FInally we uncovered that PTH receptors fill the pancreatic islands and mine where believed to be blocked with constant PTH - so the pancreatic enzymes needed for digestion could not get to the stomach. The fix was simple. I added pancreatic enzymes everyday before I ate and voila - I was able to manage the medication. These are things unque to my situation but an example of how studies just cannot cover everything. I hope my pancreae will returnn to normal now that I am off the medicine but I assume it will take time to detox.

Sclerostins research is based on a group of people who had a genetic mutation that effected sclerostin and that mutation gave them very thick bones. These people, to my limited understanding, were otherwise healthy though may be their incidnece of other specific diseases they carried that has not been studied. At least we know there are people naturally living with this condition. I dont have answers but I do hope we all take control of our care as best we can to make the best possible decsions.

dmshope,
we don't even know how unique your situation is. So many adverse effects are never examined as consquence of the medication. Cheers to your diligence. I've learned something very interesting about Tymlos and Forteo.