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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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@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.
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3 ReactionsThanks @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.
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2 Reactions@gently Do you think this is something I should bring up at the appointment tomorrow? And how would I word it, to get the best likely outcome.
@drsuefowler I agree we need to use caution.
@isabelle7,
" The effects of 36 months' treatment with teriparatide and alendronate in women and men with glucocorticoid-induced osteoporosis were examined in an active-comparator randomized, double-blind, controlled trial. This study confirmed the superiority of teriparatide over alendronate with respect BMD changes in the spine and hip and significantly reduced risk of vertebral fractures in teriparatide-treated patients."
I'm looking for the link to this quote which is probably the best presentation to get at least one more year of teriparatide.
I would ask her first, if she would consider Forteo for another year for your husband.
If she explains why not, you could follow with the post steroid information. If she remains uncomfortable with the third year, I would accept her reluctance and quietly seek an opinion from another specialist.
Your virtual is probably only 15 minutes. I'm hoping to get the link to you before then.
@isabelle7,
the 36 month study concluded that "Teriparatide increased BMD when compared with
bisphosphonates in glucocorticoid-induced osteoporosis over a 36-month period" and
"Fracture incidence at 36 months: Vertebral fractures with teriparatide vs alendronate (1·7% vs 7·7%; p=0·007) https://www.sciencedirect.com/science/article/pii/S2213858725002517
I suspect the doctor has already decided on either Reclast or Prolia. Of course, he may have an easy time with either drug. With Reclast I would worry because it has more side effects in people with autoimmune disease and Prolia makes you more susceptible to infections.
I hope the doctor will be flexible. Sometimes we have to pray for our doctors.
You are taking such excellent care of your husband.
schoknot26, P1NP and CTX both are serum labs. The "approved" use is to determine if a medication is working for you. Doug Lucas has two interesting videos. I like to add don't buy anything.
I'm happy that you are asking your doctor. If they refuse you can order them from https://www.jasonhealth.com/, but your insurance won't pay for them.
Item code Item Name Item Price
qt16609 Procollagen Type I Intact N Terminal Propeptide $80.00
qt17406 Collagen Type I C-Telopeptide (CTx) $50.00
Lab Collection Fee $18.00
Grand Total $148.00
if anyone knows a trick to reduce the size of these photo links, I'd like to use it