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Osteoporosis Message Board


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I just finished the full 24 months on Forteo, and had a new Dexa scan a couple days ago. My doctor called yesterday to tell me the results are really good and I met with him this afternoon and got copies of the results. I guess maybe I don't really understand the T-scores that well, because the results don't look all that great to me. Compared with two years ago, I went from a -4.6 to a -3.6 in the lumbar spine; a -1.8 to a -2.1 in the left femur (actually worse after Forteo); and a -2.6 to a -2.4 in the right femur. (Of course, the Z-scores are all better than this because they are age-matched.) The hip results are still in the osteopenia range so I'm not all that concerned. However, I was hoping for more in the spine, where I have scoliosis already and presumably more than normal risk of fractures. These new scores are better than the Dexa scan after 12 months on Forteo, which showed no improvement at all.

What percent increase did I actually get in the spine? Is it all that good? As I had expected, my doctor was still talking about trying to continue the Forteo a few more months, but I told him absolutely not. His next choice was Boniva, and I didn't want that either because of the jaw necrosis issue. I was on Fosamax for almost 8 years before I started the Forteo. Although my dentist has never seen any jaw bone problems on x-rays, I don't want to push my luck. We finally agreed that I would go on Evista (I also took that for a couple of years before), although he says it is not as effective as Fosamax or Boniva. The Evista also has its own set of side effects.

I'm 57 years old and have never had a broken bone. I use a treadmill 4 days a week, and lift weights 2 days a week without any limitations. I take 1800 mg. of calcium and 1000 IU of Vitamin D daily, as well as Vitamin K and a lot of other supplements. I also believe that a lot of this osteoporosis stuff is just myth and hype, as Gillian Sanson's book (The Myth of Osteoporosis) points out. Yet I'm still so scared about the osteoporosis that I am afraid to do without any medication at all!

Anyway, if someone could explain the spinal T-scores to me, I would appreciate it. :confused:
[QUOTE=trail;2854266]Spinewhine,
I don't mean to jump in uninvited but my doctor told me that your protection from the Forteo doesn't immediately go away. During my second year I even took a month holiday because I was dealing with some other health issues, and my doctor said not to worry. So, I think you can relax and assume that you will be fine for a while. Good luck. I look forward to hearing about how your next scan goes and what your most recent improvements are.
Trail[/QUOTE]

Thanks for jumping in! It's good to hear. I didn't really think I'd lose all my gains in a month, but I was hoping to coordinate my doctor's appointment with the end of my Forteo treatment, so that I could talk about my options from here without losing any time. Unfortunately, the appointment will just have to wait.

I just had the DEXA at the end of December, so I don't think I'll have another all that soon. I was thrilled with the improvement I got from Forteo and I hope to maintain it. I will certainly keep everyone posted on future treatment decisions and any information I get from my doctor.

This board has been an enormous resource for me. I posted the first day I started on Forteo and it was great to find other people on the drug who shared their concerns and their knowledge and their support. I was one of the needlephobes who never thought I could give myself the injection. A lot of us helped each other through on that.

I haven't paid all that much attention to the posts about Fosamax, etc, because I was on Forteo, but now I'll have to shift my focus. I've read a lot of the negative posts regarding side effects and I certainly plan to raise these concerns with my doctor.

For now, I'll just keep popping my calcium (when I don't forget) and my Vitamin D.

Thanks again for your information.
I am on my last month of Forteo and, like several of you, am trying to decide what to do next. I had some improvement on my last DEXA (about a year ago) and am anxious to have another to see if there is more improvement. I will see my doctor at the end of the month and I imagine she will order a DEXA at that time. I was on Actonel before the Forteo and had no side effects so I guess I could go back on that. It doesn't seem as scary to me as some of the other drugs. However, I don't like the idea of having to take anything long term. It doesn't seem like we have many options at this time. Good luck to us all in dealing with this.
It's not nearly as bad as it seems. Maybe I'm just lucky, but I find I rarely feel much anything, nor do I experience any bruising. In fact, ten minutes later I can't even find the injection site. I do AM just because I like to get everything I can over with, but people who are troubled by side effects might prefer to inject before going to bed. Anyway - it's one of the best products out there for growing bone and it sure beats the (expletive of your choice) out of surgery. Good luck to you and welcome to the board!
Hi Rosegarden: Welcome, to the board:blob_fire I'll have to agree with turtlelady, I *rarely* even feel the injection and never bruise either, the needle is so small you can barely even see it (3/16th of an inch). I didn't have any luck with the other meds, plus forteo works better anyway. It's nothing like a regular injection unless you've had experience with these really small needles. There's no measuring, since it's premetered dose and takes about 5 seconds after you've primed the pen.

On the rat studies, you do know that they were given 3-60 times the human dose over the length of their lives, plus rats are predisposed to osteosarcoma anyway. Humans can only take it for 2 yrs and at a really small dose. I had positive results found through a 2 hr urine test (NTx; n-telopeptide) in 3 months after starting it. Forteo is the only drug, I hesitate using that word, that stimulates new bone growth, so I wouldn't hesitate using it. Forteo is man made PTH (parathyroid hormone) which your body makes anyway, so you aren't getting a foreign substances just more of what you make already. Of course that doesn't mean there aren't side effects, there can be, but I haven't had any problems and most of the people taking it don't either.

Quite a few of us are already dreading the end of our treatment, and I really can't explain that for others, but I've come to rely on it so much that it gives you a sad feeling around the time of stopping it or sooner. I've got about 13-14 more months of it, but it will be strange to let it go.

I never think about the cancer issue, since so many other things cause it more readily than forteo. The risk of osteosarcoma in humans is 1 in 250,000 and that is small considering many of the other cancer statistics. The figure I quoted is for people not taking forteo just osteosarcoma in general.

Does your Dr feel this will help the fracture? Of course it's up to you but if they think it would help I would definitely take it. I've had 7 spinal fusions as a result of fusion fractures and I would never want to go through one of those again.

Below is a link on forteo if you want to read it from the Cleveland Clinic, and maybe it will help you decide.

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

Good luck with your decision and treatment.:wave:
[QUOTE=Rosegarden;2873260]Hi everyone,

I just found and joined this forum today. Yesterday my endo recommended I start Forteo. I am just into the osteoporosis zone (cannot remember numbers) on the DEXA test, but I do have a femur fracture which is not healing well, so that's why the Forteo was recommended.

I think this is just a bummer. I am afraid of the tumor issues with rats, and I hate the idea of a daily injection. I don't like to take new medications because there remains more to be learned about them over the years. Does it hurt? Does it leave bruises at the injection sites? Is morning or evening better?

I really don't don't don't want to do this, but the other option is surgery, and I don't want to do that either. I just want my life as it was before!!! (smile)


Thanks for any help.[/QUOTE]

Some of us here have just finished our two years on Forteo and we can't believe how fast it went and how easy it was to get used to the injections. Yes, some of us, including me, were nervous about the black box warnings, but we decided avoiding spinal fractures was worth what seemed like a small risk. I and others here got good results with Forteo. The shot's not a big deal. Yes, there was the occasional bruise, which went away a few days later. All in all, there were no discernable side effects (so far, anyway), and it seems to have been a good treatment option.

You will still have to take calcium supplements and vitamin D to get the best results from Forteo.

Best of luck to you.
My doctor has prescribed Actonel as the follow up to Forteo. I was supposed to start last weekend, but couldn't because of commitments to help a friend. (I didn't want to drive on the first day of taking a new medication). I'm anxious to take the first dose to see if I have any reaction to the drug. I know a number of people taking this with no bad side effects. I hope I can take it to lock in my gains with Forteo.





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