Forteo: What is your Experience?

I have MGUS and am on Forteo. I have questioned this and my Dr has said there is no problem and continue the injections.
I am not so sure about this and may discontinue the Forteo.
One of my MGUS levels has increased and I’m seeing a hematology oncologist in December.

Thank you for your reply. I was recently diagnosed with MGUS and prescribed the generic of forteo. I started taking the injections 4 weeks ago but only on Monday and Thursday. My endocrinologist knew that I had MGUS when she prescribed the medicine but I never directly asked her or the hem/onc physician. I am calling on Monday. Is it the M protein that increased? I feel overwhelmed and I do not feel like I have one doctor I can rely on 100%. How long have you had MGUS?

just curious, how long do you need to take Fosamax after forteo? Thanks!

I've been using forteo for about 14 months now. The only side effect for me is low BP at the beginning of treatment. My BP is low to start with so 80s/50s made me very sluggish, but increasing fluid intake etc got me over it. At 1 year mark my spine bmd increased ~4.5% but hip bmd decreased :(, thou hip is in osteopenia range to start with. I think this might be due to the fact that I only concentrated in weight training, now I'm adding impact exercise and elliptical and hope these would help hip bones

I will be taking Fosamax for about 5 years. You can then take a break for 2 or 3 years. I am not sure what happens after the break. My Endo said it's the only one that you don't have to take continuously.

Thank you very much Ikel! I’m facing the decision to choose a medicine after forteo completion. Also it’s unsettling to think about long term management of osteoporosis if one were to live another 2 decades

Both of the truely fine endocrinologists consulting with me recommend Reclast after Forteo.

With the removal of the black box warning on Forteo the future for those of us long lived with osteoporosis has changed. Not only can you repeat Forteo after using an interlude drug, but the response to a second two years on Forteo is as robust as the first.

Aftermarket clinical studies have proven that the 18 month limit on Forteo and Tymlos is unnecessary. Neither drug causes or is associated with an increase in bone cancer.
https://www.ccjm.org/content/88/9/489

gently, it is very kind of you to share this information! With 10 more months to go with forteo, I felt like I didn’t take full advantage of this drug, since I only had bmd increase in L-spine (4.9%) while a big drop in hip even though hip is in osteopenia status before and after forteo. I’ve been thinking about the duration limitation of forteo as well as the downside of ‘long term’ use of bisphosphonates. It’s a relief to hear that repeat usage of forteo is a possibility. My endocrinologist recommended Reclast after the completion of forteo. She was thinking about increasing the duration of reclast to 2 years instead of 1 year as originally planned, after my recent Dexa came back. My main worries is that I’m not building enough bones while on Forteo. Lately I’ve been up my exercises in terms of variety and time. Meanwhile I’m also increasing my protein intake and hope I could get most out of the remainder of this treatment course. I’m so glad finding this community and to learn as much as I can from fellow patients! 🤝

How many have had positive experiences with Forteo?

Yes! I had a horrible fall on my hip in July, after being on Forteo for about a year. I did not break my hip. This must have been the Forteo because I have severe osteoporosis. I did have a Morel Lavallee Lesion Type 5, because of the severity of this injury and am still dealing with this because it is rare and finding a doctor that is experienced with this has been difficult.