Has anyone taken Forteo for more than 2 years?
I haven't been here for a while. My question is whether anyone has taken Forteo for more than 2 years, and if yes, what their experience was like. I'll give the details below:
A quick review of my husband's situation. He's in his late 70s. In 2023, he developed Polymyalgia Rheumatic (PMR), took prednisone for about a year (40 mg daily), then developed Giant Cell Arteritis (GCA). He landed in the ER where they gave him 3 days of 1200 mg IV infusions of prednisone. Followed by a couple years on high doses of prednisone (80 mg per day).
He ended up with 3 stress fractures in his back. We then discovered he had developed osteoporosis. Something we were unaware could be a side-effect of prednisone.
He was put on Forteo shots weekly for two years, which he tolerated well.
Then, the two years was up, and his doctor put him on a weekly dose of Fosimax. He didn't feel great after his first dose, but nothing earthshattering. However, the following week was a different story. He took it on Monday, and by Wednesday was so weak in his hands he couldn't do normal things. And the pain in his hands was excruciating. He also had neck and knee pain, all quite severe. The symptoms reduced by Sunday evening, and resolved the following Monday.
His doctor suggested putting him on Residondrate which we understand is in the same family of drugs. Which frightens us. We've researched all of the options and they're all frightening. From pills to infusions, and how long the effects can last from the infusions.
So, we are considering asking his endocronologist (sp?) if he could start taking Forteo again. He's been off it about 2 1/2 weeks. They lifted the 2-year limit for certain cases. It sounds like he might fit in that category.
I'd love thoughts.
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@shocknot26 I wasn't aware there were bone markers outside of the DEXA scan. I'd love to learn more. We have another DEXA scheduled for my husband in October. First available.
@isabelle7,
the endocrinologist I see must think it will keep working for me, because he said that I can stay on it until my T-score is -1. I don't think we ever get back to -1. So I think he is saying (without using the word my cardiologist is fond of) until I finish my life.
It has been noted that usually the cells that resorb bone become more active than the cells that break bone down after about 18 months on Forteo or Tymlos. This process can be charted with bone markers.
Isabelle, I haven't tortured anyone else with my theory about this. You'll be the first and remember that I don't have a medical background.
Forteo is only the first 1-34 amino acids of the parathyroid hormone. We take it and bone turnover ensues at a good pace. It is the last sequence 55 to 84 that cause the cells that break down bone to self destruct. Soon after taking Forteo our parathyroid glands reduce production, measured by serum pth. It only takes a month off Forteo for the parathyroid gland resume producing the 55-84 acids and reduce the number of cells breaking down our bones.
They say response the second round of Forteo is as robust as the first. And your husband will be in the perfect position at 4 or 5 week after Forteo to experience that robust response.
Thanks @gently. Are you paying cash for Forteo or will you after your second 2 years?
@isabelle7, I would be cautious with that medicine family due to his side effects. Hopefully, your Dr will have good suggestions.