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Old 04-09-2010, 05:54 AM   #1
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mitsy HB Usermitsy HB User
Forteo

I was on Forteo about 4 years ago. My doctor said my osteoporosis is bad. Has anyone taken the Forteo more than once?

I take Ezorb at night and the Strontium in the morning. Is this far enough apart time wise?

I can't take Biphosphonates (Fosamax, Boniva) since I had gotten Osteonecrosis of the jaw from these drugs, so what else is left? I went to the Orthopedic about my legs and he just told me to go to my family doctor. I don't really have a family dr. and the one that I go to for minor stuff is not much of a dr. I need a doctor that knows more about this. Not knowing what to do is really depressing me.

 
Old 04-10-2010, 03:49 PM   #2
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taape HB Usertaape HB User
Re: Forteo

Hi Mitsy,
I'm on my second round of two years on Forteo. It took both myself and my doctor appealing the denial to the medication in order for 2 more years to be approved. It was approved based on the fact that I can not take bisphosphonates at least orally due to a stomach ulcer. My doctor said that the FDA guidelines limited Forteo to 2 years but she was requesting 2 more years after a break from treatment with Forteo of 3 years.

I would suggest that you see a specialist about your osteoporosis because a family doctor is not going to be able to justify to your insurance company why you need a second round of treatment with Forteo. I also see a rheumatologist. They just know more about this condition and how to treat it.

After the past year on Forteo I made an 11.7% gain in bmd. I haven't had any side effects either. Let me know if you want more information.

Last edited by taape; 04-10-2010 at 03:50 PM.

 
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Old 04-11-2010, 04:23 PM   #3
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Aleta145 HB User
Re: Forteo

Hi Mitsy and Taape!

I'm trying to find out how long the gains from Forteo last. My husband is ending his second year on it and we're trying to decide whether he should take a rest from it, or keep going. He had a DXA about 14 months into the Forteo and it definitely stopped his downward slide. In fact, he went from -3.6 to -3.2 in AP spine. Not much change in hip: -2.6 both times. But we are excited about the gain in his spine and don't want to lose that.

Someone on another board commented that she gained 16% in her spine from one year on Forteo, then lost it all in one year after going off of it. Have either of you lost bone mass after being off of Forteo for a while?

 
Old 04-11-2010, 10:52 PM   #4
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taape HB Usertaape HB User
Re: Forteo

Hi Aleta,
Good to see you. Yes, after 6 months off of Forteo I lost almost all of my gains. I was also in the middle of menopause and I don't know if that caused it but that wouldn't apply to your husband anyways.

If your husband's doctor thinks it's safe and your insurance company will pay fir it, I would think he would want to continue with it. The FDA only approved it for 2 years though and my doctor decided to interpret that as 2 years at a time with a break in treatment. I guess evaluate with the doctor whether there's something else he can take after the Forteo. That's my biggest problem because I don't want the bisphosphonates but for some reason stopping the Forteo really quickly decreased the progress I made.

 
Old 04-12-2010, 08:08 AM   #5
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Aleta145 HB User
Re: Forteo

Wow, Taape. It's awful that you lost your gains in such a short time. Doesn't really seem worth the expense, does it?

My husband's doctor has okayed an extension of his Forteo treatment, but we're about to lose our health insurance due to me being laid off, so it's a moot point now. :-(

 
Old 05-25-2010, 10:45 AM   #6
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XJ6Annie HB User
Re: Forteo

Quote:
Originally Posted by mitsy View Post
I was on Forteo about 4 years ago. My doctor said my osteoporosis is bad. Has anyone taken the Forteo more than once?

I take Ezorb at night and the Strontium in the morning. Is this far enough apart time wise?

I can't take Biphosphonates (Fosamax, Boniva) since I had gotten Osteonecrosis of the jaw from these drugs, so what else is left? I went to the Orthopedic about my legs and he just told me to go to my family doctor. I don't really have a family dr. and the one that I go to for minor stuff is not much of a dr. I need a doctor that knows more about this. Not knowing what to do is really depressing me.
No, but I just started taking it, what was your experience on it the first time around?

 
Old 05-25-2010, 11:00 PM   #7
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taape HB Usertaape HB User
Re: Forteo

Aleta145,
Sorry to hear your loosing your job, that sucks. How about using the customer care for Forteo and see if your husband qualifies for free medication? Yes, I lost bone so fast I couldn't even believe it.

 
Old 05-28-2010, 06:54 AM   #8
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Aleta145 HB User
Re: Forteo

Hello Taape,

As it turns out, my husband's doctor decided he should take a break from it, since he just finished a 2-year course on Forteo. So he got an Rx for Fosamax, and we can get the generic (alendronate) from Costco for about $18 for a 90-day supply. I'll be taking it too, because my Boniva doesn't have a generic yet. I never had a problem on Boniva, so I'm hoping that I'll be able to tolerate Fosamax.

Still looking for a job with insurance benefits. The job situation here is still pretty grim.

 
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