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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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@carmenl Be sure to check your ratio - it indicates more than each measurement separately. High CTX without a high P1NP is not good. See below video for more info.
If I am calculating right (be sure to check and understand yourself) then your ratio dropped from 143 to 44 using the method of Dr. Doug Harris. I am hoping that you have your before & after numbers accidentally switched around?
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3 Reactions@kfhoz thanks for the response! I watched that video this morning ☹️ I did the same calculation as you - same result.
The appointment with my specialist has been moved forward to Wednesday afternoon 🙏
So very quickly in the last couple days I’ve lost strength and stability. I was foolish to do a short drive on Saturday when I wasn’t feeling physically strong.
Now I’m just doing regular slow walks and lying down as soon as there’s pressure on my spine. Not driving.
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1 Reactioncarmenl, I'm winging it here, so I don't recommend this approach. At least in my body holiday seems best after the first year every five month. Conceptually I'm at variance from those I've read (those who have actually studied this for years and know way more than I do) I want high P1NP and high CTX and I want a closer ratio. 3 to 5 CTX pg/mL to 1P1NP µg/L I never do the pico-micro conversion math.
I may have reached an Icarus moment. Experimenting in my 4th I tried a 40 day break. My ratio came back 7 to 1. The 40 day prior was 4.5 to one; that would be my break trigger. A sustained 5 would make me try risedronate for a month.
It could be that 30 days is ideal for my body. or it could be that I've completely misled myself.
You might best use the following to defend a third year of Forteo.
"To compare the bone anabolic drug teriparatide (20 μg/day) with the antiresorptive drug alendronate (10 mg/day) for treating glucocorticoid-induced osteoporosis (OP). This was a 36-month, randomized, double-blind, controlled trial in 428 subjects with OP (ages 22–89 years) who had received ≥5 mg/day of prednisone equivalent for ≥3 months preceding screening. Measures included changes in lumbar spine and hip bone mineral density (BMD), changes in bone biomarkers, fracture incidence, and safety. Increases in BMD from baseline were significantly greater in the teriparatide group than in the alendronate group, and at 36 months were 11.0% versus 5.3% for lumbar spine, 5.2% versus 2.7% for total hip, and 6.3% versus 3.4% for femoral neck.
Effects of Teriparatide Versus Alendronate for Treating Glucocorticoid-Induced Osteoporosis Thirty-Six-Month Results of a Randomized, Double-Blind, Controlled Trial
@carmenl
this video might be interesting https://www.youtube.com/watch, if a little scary. Definitely not as easy to watch as Lucas.
I'm glad you are taking it easy.
It is so interesting that you can feel this.
The nice thing is that the medication start to work quickly. I hope it's Forteo or Tymlos for you.
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.
@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.