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  • Is Anyone Starting on their 3rd year of Forteo?

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    Old 08-22-2006, 10:30 PM   #1
    taape
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    Is Anyone Starting on their 3rd year of Forteo?

    I'm just wondering if anyone has had a recommendation from their doctor to stay on Forteo longer than the 2 years? Is your insurance company agreeing to pay for it?

     
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    Old 09-04-2006, 06:01 PM   #2
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    Re: Is Anyone Starting on their 3rd year of Forteo?

    The FDA has only approved prescription of Forteo for two years. I just completed two years on Forteo, and doctor has prescribed Actonel.

     
    Old 09-04-2006, 10:07 PM   #3
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    Re: Is Anyone Starting on their 3rd year of Forteo?

    Stonesc,
    Are you taking the Actonel yet? Are you having any side effects? I was started on Forteo because of low bone density and stomach problems from Fosamax. My stomach can't handle those meds so I'm off to get a second opinion and find out what my options are.

     
    Old 10-10-2006, 06:20 PM   #4
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    Re: Is Anyone Starting on their 3rd year of Forteo?

    I have just finished 2 months on Actonel. So far, no side effects. I had plenty of side effects with the Forteo. Taking the Actonel is refreshing after Forteo.

     
    Old 10-10-2006, 07:27 PM   #5
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    Re: Is Anyone Starting on their 3rd year of Forteo?

    Hi Taape: I have talked to people that went over the 2 yrs. of Forteo, but they had extreme circumstances that allowed them to do it, but it wasn't for a long period of time after the 2 yrs ran out.

    This one particular patient has enormous problems with all types of allergies, and could not take bisphosphonates without it sending her to the hospital. Because of this they extended her time on Forteo (not that long) several months or so, but she has a rare situation, with many other conflicting problems.

    She's now off the Forteo, and on the iv infused pamidronate (aredia). She hasn't had any problems with this med, except she did mention that it caused leg cramps/pain but it only lasted for a month, and was very bearable. She and her doc feels she has to remain on something to preserve the gains she got from Forteo, and this was what they did. She has so many allergies, I really feel for her, since there are so many meds, foods, she can't take/eat.

    She also mentioned that the iv infused aredia has not caused any of the esophageal, stomach problems that the ORAL bisphos's do because it isn't going through her intestinal tract. She also doesn't have any of the concerns about ONJ, because according to her, she is not getting the dosage amounts that are used for cancer treatment, she hasn't ever had chemo, nor was she ever on long term cortisone, all of which are the things that need to be present to get ONJ.

    I mentioned aredia to you before, but sure enough got a post in response saying that this drug causes ONJ. This is not true 'unless' you have the above problems already in existence (cancer, chemo, cortisone, recent severe dental truama) and you're given those high dosages, for a long length of time for treatment of cancer, and I hope the link I posted back then was read by some at least because it was a good med article explanation on this topic. If you agree to this, or not, you'll probably get the med for some time, but "never" at the high dose rate that cancer patients get, and they get it much more often at a higher dose than osteo patients do.

     
    Old 10-10-2006, 07:36 PM   #6
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    Re: Is Anyone Starting on their 3rd year of Forteo?

    Quote:
    Originally Posted by stonesc
    I have just finished 2 months on Actonel. So far, no side effects. I had plenty of side effects with the Forteo. Taking the Actonel is refreshing after Forteo.
    Hi Stonesc: I'm just curious as to the side effects you got from Forteo. I haven't had any, but that just goes to show we are all completely different.

    I heard about the insomnia, and weight gain, but the weight gain problem "if" it was a true side effect is a small price to pay for increased bmd. I gained weight after taking Forteo, but I absolutely can't blame it on the drug. I have too many other factors that I know played a part in the weight gain and Forteo would just be an easy excuse.

    Did you ever have any of the dizziness problems, since that seems to be the one they mention the most on the insert? I only felt 'slightly' dizzy one time, which went away in a min. or two, and never returned, and it was never a severe feeling just a momentary lightheadedness that didn't interfere with anything.

    Good Luck

     
    Old 10-18-2006, 02:05 PM   #7
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    Re: Is Anyone Starting on their 3rd year of Forteo?

    Taape -

    It's been a long time since I've been on the boards. I finished up my 2 years on Forteo in April. I did great on it and no side effects other than a dizzy spell right after the injection on two occasions that lasted about a minute. I have a history of fractures: Both feet and one hip prior to Forteo. All the time I was on Forteo, I suffered NO fractures and it was a wonderful 2 years. I've been off of it for 6 months and have had fractures in both feet since then. My rheumatologist talked to me yesterday about going back on Forteo. He is well aware of the 2 year timeline but he thinks that the benefits outweight the risks in my case. I'm still wondering what is best. I know that continued fractures could put me in a wheelchair or even bedfast....not to mention the constant pain I've been in for the last 3 years from the after affects of the fractures.

    I haven't contacted my insurance yet about starting Forteo again. I am also wondering if they will pay. I think I will just send my co-pay and my RX and see what happens! I can't afford to pay for it myself without help from my insurance. I am going to have surgery to try to correct a problem that one of the fractures caused in my foot and the Ortho doctor I saw also mentioned starting Forteo again for a while. He said Forteo would help to heal the bones that he will have to break in order to repair the damage in my foot. I'm anxious to see what my insurance says about my coverage. I did so well on it that I really would like to take it again but I also don't want any of the the side-effects that are, as yet, unknown when used for longer than 2 years. As you can tell, I'm in a quandry as to what to do.

    ~Oldbones

     
    Old 10-18-2006, 04:57 PM   #8
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    Re: Is Anyone Starting on their 3rd year of Forteo?

    Hi Oldbones: Please let us know what you decide, and if your insurance co covers the continuation of Forteo. I know a lot of people in similar situations, but only a few have gone beyond the 2 year limit. If your doc thinks this is a good idea, and the insurance will cover it, I wouldn't worry about the time limit/side effects, but of course the decision must be yours.

    Remember the rats that were given this drug took 3-60% higher daily doses than humans and also recieved it for 80-90% of the lifetime while their bones continued to grow. Humans are not given this high dose, nor for a period of time, like the rats, so it seems unlikely that a human would get bone cancer from it. I've talked to several specialist about this, and their reaction was, for humans to get cancer, as the rats did, you would have to duplicate the process the same way for both (same dose rate-same length of time etc), and human/rat bones would have to be extremely similar which they aren't. Of course this is my opinion based on what I've read, but if I was given the chance to take Forteo longer than 2 years, I would do it. I can't tell anyone else what to do, but weighing the risk v benefit seems like the only logical way of handling a decision like this, plus the additional advice from your doctors.

    I've only been on Forteo since April, with a -3.6 spinal t-score and a history of 6 spinal fusion fractures, 'prior' to taking Forteo, no fractures since I started it. Since I started Forteo I have increased bone turnover but won't know the actual number until next week when I see my mineral metabolism doc.

    I wish you all the luck in the world, and keep us posted if you don't mind.

    Below is an excellent article on Forteo/Study... It's long but worth the read!

    [url]http://www.ccjm.org/pdffiles/DEAL703.PDF#search=%22forteo%20and%20ost eosarcoma%22[/url]

    Pam

    Last edited by DesertBloom; 10-18-2006 at 05:07 PM.

     
    Old 10-18-2006, 10:52 PM   #9
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    Re: Is Anyone Starting on their 3rd year of Forteo?

    Oldbones,
    Thanks for posting. I'm sorry that your suffering from fractures. I do hope your insurance pays for the Forteo. I'm not nearly as concerned about the Forteo side effects as having fractures. I wouldn't want to take it for many, many years but maybe in a couple of years there will be more options besides bisphosphonates. I haven't had any yet but I am waiting for spine surgery and I've got to have much better bone density before I have it. I'm switching to a Rheumatologist and have an app't in a couple of months from now. I'll just keep using Calcium until then. I do know of some people who have had their insurance pay for another 6 months of Forteo. I'll look forward to hearing from you again soon.

     
    Old 10-25-2006, 05:57 PM   #10
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    Re: Is Anyone Starting on their 3rd year of Forteo?

    Hello DesertBloom and Taape:

    Thanks for your replies. DesertBloom: I read the article that you were kind enough to share the link to and I found it quite interesting. I thought I had read everything there was to read on the web about Forteo but hadn't ran across that excellent article. When I was first starting Forteo and my Rheumatologist and I were discussing the black box warning, he said "aren't you glad you aren't a rat".

    I sent in my Forteo RX to my insurance pharmacy and will just have to wait and see what happens. I'm hoping that sometime in the near future, there will be some results of studies done on patients taking Forteo for another 2 year period. However, I don't know if there are any ongoing studies at this time.

    I'll keep you both informed on my insurance.

    ~Oldbones

     
    Old 10-26-2006, 12:13 AM   #11
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    Re: Is Anyone Starting on their 3rd year of Forteo?

    Hello,
    Well today was my last day on Forteo. I don't have any treatment lined up yet and I'm still waiting to get in to see a new Rheumatologist. I don't see how I can possibly eat or take enough Calcium to keep my level regulated like while on the medication. I wish I was continuing on this longer. We'll see what the new doctor says.

    Yes, I wish there was some data on people taking a second 2 year treatment of Forteo.

     
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