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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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Isabelle7, I'm on my 4th year of Forteo. It may work well for your husband. Some doctors aren't prescribing it this way, yet. They aren't sure which patients would benefit.
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5 Reactions@gently
Thank you! I would like to approach his doctor about this option on Friday when we meet with her.
I'm glad to hear that you are on your 4th year. It gives me hope.
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1 Reaction@gently, what do you plan to do next?
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1 Reactionhello, dr sue.
I hope to stay on Forteo (till the end). I'm following bone markers rather than dexa. Though I'll have a dexa in November.
It was pure luck to start with a medication that doesn't cause side effects for me. And while I prefer its mechanism of action, I'd try any of these drugs to avoid fracture.
If the bone markers warn me after a 4 week drug holiday, I'd try low dose risidronate for a month and check with the markers again.
I do see the best endocrinologist (in the world).
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4 Reactions@isabelle7, I do hope his doctor is really smart and says, "I was just thinking that myself."
I’m in my third year being on Forteo. Have not fractured and feel pretty good considering…I do the injections in the evenings just before bedtime and it’s worked well for me.
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2 Reactions@gently May I ask you to share which particular bone markers you have been using? I would like to push for some along with the DEXA in the future. Thanks.
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2 Reactions@drsuefowler We have an appointment (virtual) with his endocrinologist on Friday so I'm planning to discuss all options with her. Wondering if he should have tried the Risedronate - we were afraid to since it's in the same family as Fosamax, which he reached to badly.
@gently I'm curious - does your doctor believe Forteo will continue working after the two years? In some places, I've read that they don't give it after two years because it's not effective. I don't know if that information is accurate. I'd love to hear what your doctor thinks about this, and then relay that to his doctor tomorrow.
@vmcd It looks like some doctors are allowing people to continue with Forteo past the two-year mark. I'm glad you haven't not fractured. My husband does the injections first thing in the morning. Or I should say, did the injections. She took him off Forteo three weeks ago, tried Fosamax, had a severe reaction, prescribed Risedronate but he has been afraid to take it. So we meet with her virtually tomorrow and we'll see what she has to say.