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  • Taking Forteo On & Off?

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    Old 12-19-2007, 06:07 PM   #1
    BoomerBones
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    Taking Forteo On & Off?

    Hi,

    Anyone have any experience with not taking Forteo every night but every other night or every few days as a result of bad side effects?

    My doctor is recommending I try this type of intermittent routine rather than not take it at all but I'm curious if it's going to have any impact if I do it this way. He's an osteo specialist but he doesn't know about whether this type of routine produces any successful results.

    The side effects have been too intense after only 4 nights of injecting so the doctor has told me to go off it for a few days and then try this on/off schedule.

    I welcome any insights any of you can share. I don't want to stop the Forteo but I also don't want to put myself through this for nothing. And I'm running out of drug options as Fosamax after 3 years has done nothing.

    thanks!
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    Old 12-19-2007, 06:41 PM   #2
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    Re: Taking Forteo On & Off?

    Sorry to hear your having bad side effects, what kind of side effects?
    The forteo keeps your calcium level stable so bone can grow. If your calcium level can stay stable for a few days in a row in between injections maybe it would work. Let us know how it works out for you.

     
    Old 12-20-2007, 09:26 AM   #3
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    Re: Taking Forteo On & Off?

    Hi Boomer: So sorry about the side effects, but I'm really curious what they are?? I read an article at either the ASBMR or JBMR that mentioned something about taking Forteo like you mentioned but I can't find it right now. I think the dose was different-maybe higher than 20 mcgs. I'll try to find it and you look too if you want to read something on this type of approach. The ASBMR is (amer. soc. of bone/mineral research) and the JBMR (Journal of bone/mineral reasearch).

    Good luck, if you where taking the injection at night were there side effects that happened during the night or the following day?

    Last edited by DesertBloom; 12-20-2007 at 10:58 AM.

     
    Old 12-20-2007, 05:31 PM   #4
    BoomerBones
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    Re: Taking Forteo On & Off?

    Thanks for the article references. I will definitely check them out.

    I am really bummed by the reactions after only 4 nights. Injected each night between 8:30-9pm and as of 2nd night my head felt like it was going to explode. Then major nausea and then it subsided and I was able to sleep. However... the next mornings... it got progressively nastier in terms of headaches, dizziness (more like vertigo not passing out) and waves of nausea. I get migraines, typically labrynthe migraines where the room seems to be moving along with the floor and walls, and this is what it's felt like.

    so last night, on doctor's orders, I did not inject and by about 5pm today I started to feel normal.

    so now I don't know what to do. Do I inject again and see what happens? Do I figure that my body just hates this drug and just take my chances without it and go back on Fosamax which has done nothing for me in 3 years?

    This on/off routine seems questionable to me but then maybe my body just wants a lesser dose. You know, the drug companies just assume that all of our bodies assimilate the drugs the same and we all know that's just nuts!

    Thanks again for your feedback. It really means a lot to hear what you have to say!

    Happy holidays to all!!
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    Old 12-20-2007, 07:57 PM   #5
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    Re: Taking Forteo On & Off?

    Hi Boomer: Has your dr mentioned trying Reclast? It's a once a year iv infused Bisphos-like Fosamax-but much stronger. I've talked to people taking this and the typical side effects are a flu like effect for 2-4 days, then you have a whole year before you take it again. I don't know if this would work, but it's used for people who didn't get good results from the once a week or once a month dose of fosamax etc.

    After hearing about your side effects, I don't see how you could live like that, that is very dangerous to have those symptoms. Like I mentioned I've heard of taking Forteo 3 days on and 3 days off, but I can't find the article yet.

    Unfortunately I can't tell you want to do, but I would ask about the Reclast, or even the every 3 month routine that comes in iv infused Pamidronate, Aredia, and I "think" Fosamax and Boniva. Since it's a stronger dose maybe you would see improvements that way that isn't so hard on your body.

    I haven't heard that Forteo comes in a smaller dose, but I have read about the larger dose done on that 3 day schedule, but it was in a clinical trial.

    I sure hope you can find a solution to this, your symptoms sound horrible, and since you only have about 4 hours a day where you feel slightly okay, that seems really hard to justify. Denosumab has been approved for cancer, and during the trials they showed it increased bmd greatly, but the kicker, is you have to have cancer to get it since it's not approved, as of yet, for just osteoporosis, which they are in the process of doing, but it's also a bisphos type of drug. There is also calcitonin nasal spray, but I don't think they would recommend this for low t-scores plus it works slow, and has few side effects, at least it would be better than nothing.

    Keep us posted on this, and if I find the article I'll post it. Since your dr is a specialist, you could tell him the trial I'm referring to was in either the ASBMR or JBMR journal, and I'm sure he has access to those journals.

    Good luck I'll keep you in my thoughts and send good vibes your way

     
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