Considering Forteo

Posted by lisitabelle @lisitabelle, Feb 22 7:54am

Hello everyone,

My doctor would like me to start Forteo. I am 62 and have what is considered severe osteoporosis. It has been stable for many years and I have been treating it holistically (fit and exercise) and with Evista. Due to my age and underlying Panhypopituitarism (needing steroids for most my life) , my doctor is very concerned about my bones.

Has anybody used Forteo and how has that been? I am concerned about side effects and he mentioned that the black box warning of osteocarcinoma has been removed, but I still worry about that as well. It’s one of those things that I need to consider the benefits versus the negative side effects.

Thank you all so much for any information you may have.

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

Profile picture for broken13 @broken13

I also used Evista. Several compression fractures had me start Forteo in 2016. Did the full course of 24 months. Some initial side effects of tummy upset, leg cramps, slight dizzy after shot, so took it before bed. Great success and have not fractured since. Followed up with one shot of Prolia (did not go well) then Evista for 5 or so year. Now back on Forteo (Teriparatide) for a booster of 18 months and then will go back on Evista. I believe Forteo is one of the better bone building drugs on the market.

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@broken13 thank you so much for your help. Do you know if a drug like Evista can be taken instead of a a drug like reclast?

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Profile picture for gently @gently

Isabelle, echoing the other fine answers here, I've been taking Forteo for some time without negative effects.

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@gently thank you so much.

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Profile picture for lisitabelle @lisitabelle

@broken13 thank you so much for your help. Do you know if a drug like Evista can be taken instead of a a drug like reclast?

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@lisitabelle I understand that Reclast is stronger and the preferred medication for follow up. With my severe reaction to bisphosomates, I just did not want to risk it.

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I was given the option of Forteo or Evenity and I chose Evenity.

Forteo requires daily self injection for 18 months which I didn't want to do. Also it requires refrigeration and I travel somewhat. The hotels in Europe do not have refrigerators in the rooms like hotels here in the US. It would be a hassle to travel with the drug in a specially insulated bag.

The other issue is that Forteo would need to be filled at the pharmacy every month. I get Evenity in the doctor's office and it is covered under my Medicare supplemental plan (I guess because it's a procedure).

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Profile picture for followheart87 @followheart87

I was given the option of Forteo or Evenity and I chose Evenity.

Forteo requires daily self injection for 18 months which I didn't want to do. Also it requires refrigeration and I travel somewhat. The hotels in Europe do not have refrigerators in the rooms like hotels here in the US. It would be a hassle to travel with the drug in a specially insulated bag.

The other issue is that Forteo would need to be filled at the pharmacy every month. I get Evenity in the doctor's office and it is covered under my Medicare supplemental plan (I guess because it's a procedure).

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@followheart87 Realize that you have opted for Evenity, but for future reference, I am on teriparatide (generic Forteo) and it is covered by my Rx plan (Wellcare) in Pennsylvania (the plans vary by state). I get it from a pharmacy that is affiliated with a major medical center and they bring it to me, a few months at a time. Pretty great.

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Profile picture for yvettenie @yvettenie

I am 70 and have had a compression fracture in my L4- L5. I have been using Forteo for 18 months with no side effects. I also am fit and lift weights routinely. My doctor will do another Dexascan in 5 months. I will update then. Good luck!

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@yvettenie
I started Forsteo 20 months ago and my last dexa showed an improvement on my hip 👏my doctor told me to stop and only take calcium and vitamin D As for now I’m happy !

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Profile picture for sodita @sodita

@yvettenie
I started Forsteo 20 months ago and my last dexa showed an improvement on my hip 👏my doctor told me to stop and only take calcium and vitamin D As for now I’m happy !

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@sodita Your doctor said that? That sounds like poor advice. Normally, if you don't follow up Forteo (or Tymlos) with a biphosphonate, you will lose the gains you made. Calcium and vitamin D aren't going to work.

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Profile picture for sodita @sodita

@yvettenie
I started Forsteo 20 months ago and my last dexa showed an improvement on my hip 👏my doctor told me to stop and only take calcium and vitamin D As for now I’m happy !

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@sodita Hope mine turns out the same! Thanks for sharing!

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Profile picture for sodita @sodita

@yvettenie
I started Forsteo 20 months ago and my last dexa showed an improvement on my hip 👏my doctor told me to stop and only take calcium and vitamin D As for now I’m happy !

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@sodita Like @njx58 I am also surprised that your doctor is not putting you on another drug to lock in your gains from Forteo (generic name Teriparatide).

Below are some references. In your situation I would print out some articles and take them to your doctor to discuss. My doctors have been open to such talks.

Cleveland Clinic:
https://health.clevelandclinic.org/osteoporosis-medications
Excerpt: " After finishing your course [of teriparatide (Forteo®) ], you’ll need to start on an anti-resorptive medication, like bisphosphonate or denosumab. “If you don’t do anything further, you’ll lose the ground you gained,” Dr. Mileti points out."

Bone Health and Osteoporosis Foundation (BHOF):
https://www.bonehealthandosteoporosis.org/patients/treatment/medicationadherence/teriparatide-parathyroid-hormone-pth-1-34-forteo/
Excerpt: "At the end of [Forteo treatment], bone loss can be rapid. In order to retain the benefits of treatment with teriparatide, most experts recommend that patients start an antiresorptive medicine right after finishing the teriparatide therapy."

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Profile picture for njx58 @njx58

@sodita Your doctor said that? That sounds like poor advice. Normally, if you don't follow up Forteo (or Tymlos) with a biphosphonate, you will lose the gains you made. Calcium and vitamin D aren't going to work.

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@njx58, except that not knowing the medical history makes our questioning of the doctor's wisdom also questionable. Men, for example who have suffered from bone loss due to androgen deprivation can recover easily without further medication after regaining the loss and the testosterone.
We also don't know the doctor's intent. Or if they are yielding temporarily to a patient's need for a break. I suspect that a month or even two month interlude might be advisable. It is a very good question for the doctor, though.

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