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I was on Forteo for 2 years and did well, although to tolerate it, I had to take morning and evening antihistamines to quell a rash. I can't take bisphosphonates because of the proactive dental work required that could exacerbate my trigeminal neuralgia. I wanted to keep taking it, because I now have severe osteoporosis after 4 out of the last 5 years on prednisone for giant cell arteritis. However, my cardiologist and endocrinologist vetoed it because they said Forteo had deposited calcium in my arteries. (Before treatment, a cardiologist declared them whistle clean.) After a 9 month remission, I had a laminectomy and it triggered a new flare. Back on prednisone and I now have a dilated ascending aorta, a known and feared side effect, that can cause an aneurysm or aortic dissection should it progress. Most of these drugs can have cardiac complications; I'm afraid to take them, but even more concerned about setting off the trigeminal neuralgia with its bouts of excruciating pain. I did extremely well my first two years and went into remission, but there is the devil to pay when you have to take these powerful drugs long term. I'm doing what I can: I take AlgaeCal and strontium, eat a diet high in plant based calcium and am set to start the Onero program for osteoporosis. I know it's not enough, but it's probably better than nothing. I'm thankful prednisone has save my sight, but my major battle now is with the drugs. We are all react differently to meds; this was my experience. I hope you can find something that works for your husband; my heart goes out to you both.

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Replies to "I was on Forteo for 2 years and did well, although to tolerate it, I had..."

@jalee That sounds like an awful experience. We are going to have a ct scan to test his calcium score. We've never had one before (I'm going to have it done too just for good measure - our doctor recommends it). So hopefully this will give us some good info now that he's been on Forteo for two years, moving into his third. We don't know what comes after that since he can't safely take many of the other meds for osteoporosis. And his is what they're calling severe. If he can build some bone in this next year, that would be a win. He maintained, didn't gain, the past two years but they believe that's because he was still on high doses of prednisone most of the time he took Forteo. They consider it a win with the Forteo because he had no more bone loss. So we'll see. I am hoping and praying we get through this without major issues like you've had.