Has anyone taken Forteo for more than 2 years?

Posted by isabelle7 @isabelle7, 2 days ago

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.

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

Profile picture for drsuefowler @drsuefowler

Thanks @gently. Are you paying cash for Forteo or will you after your second 2 years?

Jump to this post

@drsuefowler, in the beginning I paid with goodrx for the generic teriparatide alvogen manufactured. Brand Forteo has been affordable in other countries and I travel anyway.
Pens in Singapore were $100 each. Around $205 for Foresto in Paris. $100 in Colombia. I have pens to last through January, when I'll consider looking at medicare D formularies.

REPLY
Profile picture for vmcd @vmcd

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.

Jump to this post

@vmcd, do you know reasons why your prescriber is extending your use?

REPLY
Profile picture for gently @gently

@drsuefowler, in the beginning I paid with goodrx for the generic teriparatide alvogen manufactured. Brand Forteo has been affordable in other countries and I travel anyway.
Pens in Singapore were $100 each. Around $205 for Foresto in Paris. $100 in Colombia. I have pens to last through January, when I'll consider looking at medicare D formularies.

Jump to this post

Wow @gently! That is an amazing solution. It looks like you actually can stay on Forteo until you are at -1.1.

REPLY
Please sign in or register to post a reply.