Has anyone taken Forteo for more than 2 years?

Posted by isabelle7 @isabelle7, Jul 7 4:12pm

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.

gently | @gently | Jul 10 2:01am

In reply to @drsuefowler "Thanks @gently. Are you paying cash for Forteo or will you after your second 2 years?" + (show)

@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.

gently | @gently | Jul 10 2:09am

In reply to @vmcd "I’m in my third year being on Forteo. Have not fractured and feel pretty good considering…I..." + (show)

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

drsuefowler | @drsuefowler | Jul 10 6:06am

In reply to @gently "@drsuefowler, in the beginning I paid with goodrx for the generic teriparatide alvogen manufactured. Brand Forteo..." + (show)

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

shocknot26 | @shocknot26 | Jul 10 7:42am

In reply to @gently "schoknot26, P1NP and CTX both are serum labs. The "approved" use is to determine if a..." + (show)

@gently thank you so much once again for sharing your wealth of knowledge. I appreciate you.

gently | @gently | Jul 10 9:38am

shocknot, thank you for your kind post.

isabelle7 | @isabelle7 | Jul 10 4:15pm

I wanted to let everyone know that we spoke to his doctor (endicronologist) today and she has agreed to extend his Forteo for a year. We're happy about that. She'll reassess after the year. She first sounded like she wasn't going to do it, then I pleaded my case and she agreed. Phew!! She's already ordered it, and in the past Kaiser covered it 100%. I'm hoping that happens again.

Thank you for everyone who helped me get to this point.

drsuefowler | @drsuefowler | Jul 11 2:11pm

In reply to @gently "schoknot26, P1NP and CTX both are serum labs. The "approved" use is to determine if a..." + (show)

@gently, can we also just walk in to Quest and ask to pay for these labs?

gently | @gently | Jul 11 2:57pm

drsue, yes. And you can order labs online. I haven't been able to find bone markers CTX or P1NP in their selection.

kfhoz | @kfhoz | Jul 12 11:39am

In reply to @drsuefowler "@gently, can we also just walk in to Quest and ask to pay for these labs?" + (show)

@drsuefowler I could not buy CTX or P1NP tests directly from Quest Diagnostics, even though that is the lab who actually did the tests that I ordered via Jason Health!

I found a blood calcium test to compare Quest with JH and the Quest price was 10x what JH charges.

Although various testing labs offer some direct self-pay tests, Jason Health (JH) offered more tests, and far better prices.

carmenl | @carmenl | Jul 12 2:52pm

In reply to @gently "hello, dr sue. I hope to stay on Forteo (till the end). I'm following bone markers..." + (show)

@gently how often and at which juncture/s have you done a 4 week drug holiday during your 4 years of Forteo? This is very interesting, this approach.

What levels in your BTMs would indicate a change of drug strategy?

I understand P1NP is expected to drop significantly. Although I don’t know what’s expected at only 1 month post Forteo?

I understood CTx needs to stay in 300-600 range. Higher than that means osteoclasts are overactive.

At 4 and a half months post my 2 years of Forteo my 1st CTx since the 2 years mark has gone from 370 to 407 so not bad, I think. P1NP dropped from 53 to 18. I’m feeling weaker and gravity bearing down on my spine which is scary and I’m going to ask specialist about a third year of Forteo this week.

Let me add I fractured after intense course of prednisone and started Forteo subsequently.