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-   -   how do u get around forteo dangers? (https://www.healthboards.com/boards/osteoporosis/315185-how-do-u-get-around-forteo-dangers.html)

imlb2 08-15-2005 11:16 AM

how do u get around forteo dangers?
 
i'm really curious about how all of you managed to get around the warnings... what pushed you over the fear of the osteosarcoma???

spinewhine 08-15-2005 03:59 PM

Re: how do u get around forteo dangers?
 
[QUOTE=imlb2]i'm really curious about how all of you managed to get around the warnings... what pushed you over the fear of the osteosarcoma???[/QUOTE]

Well, for one thing, the fear of getting compression fractures and being all hunched over and in pain, or of breaking my hip -- if it could otherwise be avoided -- pushed me over.

Obviously, if I develop a BAD side effect from this drug, I'll really regret taking it, but I also thought, what if ten years down the line this is the front line treatment established to be safe and I didn't take it and was suffering when that didn't have to be. I think life is filled with "the road not taken" choices. You have to do the research, take a huge gulp, and follow your instincts.

My doctor told me that Forteo had been tested in larger mammals without the increased osteosarcoma results -- it only showed up in rats, whose bones, unlike humans, continue to grow throughout their lives. Plus, they got pretty large doses too.

I must say, I hadn't read "The Myth of Osteoporosis" by Gillian Samson at that time -- a book recommended by people on this board. You should read it before deciding on a drug. The author makes a strong case for the position that osteoporosis and low bone density are not necessarily the same thing and that having low bone density doesn't necessarily mean you will develop fragility fractures. The author's family members all have low bone density and apparently are doing fine without medication.

It's good food for thought.

My endocrinologist was recommended by my gynecologist, who I trust. The endo was written up in New York Magazine's issue devoted to the best doctors in NYC as one of the best endos, so I that gave me some additional reason to believe he's pretty well regarded. I don't think he's just trying to make money for the drug industry. I think he's seen success with Forteo in terms of building bone density and it just seemed to make sense to take advantage of the only drug that appears to actually build bone. I also have good insurance so the drug is costing me very little, although it is ridiculously expensive if you have no coverage.

I don't know anyone outside of cyberspace on the drug, so these boards have been a blessing. There are so many people here taking it, so we all get the benefit of everyone else's doctor's input and research as well.

I'm just keeping my fingers crossed and saying a prayer that the medicine helps and doesn't do me any harm.

taape 08-15-2005 04:40 PM

Re: how do u get around forteo dangers?
 
I decided to take it because I need back surgery which I can't get until my bone density improves. Plus, I can't tolerate the biophosphates and this seemed like a good solution to that problem. I'm going to ask for a bone scan though just to see if there's any indication of osteosarcoma. I know one person who is also on Forteo that I speak with on the phone. That individual also was in the same situation as me, needing surgery and decided that this treatment would accelerate bone growth.

imlb2 08-15-2005 08:32 PM

Re: how do u get around forteo dangers?
 
thank you both so much for taking the time to reply. i hadn't heard of that book, so i'm really happy to get the recommendation. my physiatrist and others have said the same thing.. keep in mind that there is no way of knowing how many thousands? millions? of people are walking around w/ low bone density, who don't even know it, and who do NOT get fractures. as long as one is in a position to keep strengthening surrounding muscles, etc., it seems to me a good risk to take. i'll stay on the fosamax or actonel, kick up my calcium to 1500 supplemental mgs (not even counting the hit in the OJ), vitD, magnesium, boron, etc., keep up w/ resistance and weight bearing exercises. i wish you both (and others here who are on it) the very, very best of luck w/ forteo.

BoneMan 08-16-2005 12:54 PM

Re: how do u get around forteo dangers?
 
Sinewhine,
Thank you very much.
I believe you put Forteo into the correct perspective for all of us. I broke ribs, and severe tail bone break, and 2 vertibrae are compress fractured right now, so I know what the pain of this is all about.
As a 53 year old male, I have lost 2", and have a slight upper back / neck hump, and my head is hard to hold straight, eyes up front. I don't want to get worst, and be looking at peoples feet the rest of my life.
I have seen an improvement with 2 years on Fosomax, but if I all of a sudden slide down the T score scale, I have no problems taking Forteo.
If you have never ever had a breakage, its hard to justify in your mind to take Forteo.

Pain is a wonderful teacher / convincer.

spinewhine 08-16-2005 03:36 PM

Re: how do u get around forteo dangers?
 
[QUOTE=BoneMan]Sinewhine,
Thank you very much.
I believe you put Forteo into the correct perspective for all of us. I broke ribs, and severe tail bone break, and 2 vertibrae are compress fractured right now, so I know what the pain of this is all about.
As a 53 year old male, I have lost 2", and have a slight upper back / neck hump, and my head is hard to hold straight, eyes up front. I don't want to get worst, and be looking at peoples feet the rest of my life.
I have seen an improvement with 2 years on Fosomax, but if I all of a sudden slide down the T score scale, I have no problems taking Forteo.
If you have never ever had a breakage, its hard to justify in your mind to take Forteo.

Pain is a wonderful teacher / convincer.[/QUOTE]


I'm very glad to hear that you had success with Fosamax. My doctor thought Fosamax a safe and good option for hanging onto one's bone density, but not for getting significant gains. Our plan is for me to go on Fosamax after the two year period on Forteo. I hope I can tolerate it because so many on this board have had problems with it -- but that's a long way off. For now, I just want to continue with Forteo and hopefully not regret that choice.

BoneMan 08-16-2005 03:59 PM

Re: how do u get around forteo dangers?
 
Spinewhine.
After 2 years on Fosomax my scores went from
Hip 2.7, spine 3.3 to hip 2.4 , spine 2.7,
So for me at least it working, with the addition of Calcium. I did within that time frame start a Calcium intake program, but just in the last few months increased it to 1,500 a day, from about half of that amount. I was way under that before because of my kidney stone issue.
I think I would rather have kidney stones, than loose more height, and have another break.
A stone will pass in hours, the break takes weeks, and in the case of my tailbone, years, and it still hurts.
Last year I passed probably well over 30 stones, and had to have 4 surgically removed, piece of cake compared with breaks.

My stone issue has been around since the 1980's, so its not a new developement.

My thinking, due to my high blood calcium content, was that if I limited my Calcium intake, less stones.
Well, you can't have you cake and eat it too, so maybe I should be called stoneman/boneman. :jester:

spinewhine 08-16-2005 05:34 PM

Re: how do u get around forteo dangers?
 
[QUOTE=BoneMan]Spinewhine.
After 2 years on Fosomax my scores went from
Hip 2.7, spine 3.3 to hip 2.4 , spine 2.7,
So for me at least it working, with the addition of Calcium. I did within that time frame start a Calcium intake program, but just in the last few months increased it to 1,500 a day, from about half of that amount. I was way under that before because of my kidney stone issue.
I think I would rather have kidney stones, than loose more height, and have another break.
A stone will pass in hours, the break takes weeks, and in the case of my tailbone, years, and it still hurts.
Last year I passed probably well over 30 stones, and had to have 4 surgically removed, piece of cake compared with breaks.

My stone issue has been around since the 1980's, so its not a new developement.

My thinking, due to my high blood calcium content, was that if I limited my Calcium intake, less stones.
Well, you can't have you cake and eat it too, so maybe I should be called stoneman/boneman. :jester:[/QUOTE]
Sounds like you've been through a lot. I hope you continue to have success with Fosamax and that the stones don't torture you.

I'll be on vacation for about 10 days. I'll miss all my board comrades. See everyone soon.

BoneMan 08-16-2005 07:48 PM

Re: how do u get around forteo dangers?
 
Have fun on holidays SpineWhine.
And remember, Haagan Das Ice-Cream has lots of calcium in it, so make sure you have your desert.


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