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  • Forteo Results after 24 Months

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    Old 03-09-2007, 05:20 PM   #1
    CABones
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    Forteo Results after 24 Months

    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.

     
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    Old 03-09-2007, 05:33 PM   #2
    DesertBloom
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    Re: Forteo Results after 24 Months

    Hi I'm sorry you didn't get the improvemtents you expected, but going from a -4.6 to a -3.6 is a really good improvement, it's a whole standard deviation increase, but unfortunately still considered severe osteoporosis.

    Read the series below from the Univ of WA and you should understand it better.

    Sorry I can't go into much more explanation right now, but reading this should explain a lot. Also make sure you read the whole series which appears at the top of the page in a bulleted list, after you read the WHO T and Z scores.

    [url]http://courses.washington.***/bonephys/opbmd.html#WHO[/url]

    Good Luck... and come back with more questions if you have any.

     
    Old 03-09-2007, 07:11 PM   #3
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    Re: Forteo Results after 24 Months

    Quote:
    Originally Posted by CABones View Post
    ...What percent increase did I actually get in the spine? ...
    To calculate the percent increase, you need to know the raw DEXA numbers (not the T-score). For example, if your raw BMD score increased from .500 to .600, that would be a 20% increase.

    Last edited by PikaB; 03-10-2007 at 06:24 AM.

     
    Old 03-11-2007, 05:23 PM   #4
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    Re: Forteo Results after 24 Months

    CAbones,
    Congratulations on your improvement in bone density in your spine. Didn't you feel that the two years on Forteo went by quickly, I did. I have a DEXA coming up in a few weeks and I'll post my T Scores then. I've been off of the Forteo for almost 6 months just using Calcium and Vit D, eating foods with dairy, and exercising. My doctor also wants me to use Boniva by IV infusions and I'll have more information soon to make a decision. I did ask about Evista and was told that the medication is too weak for severe osteoporosis and would be a waste of time. Who knows really, that's only one doctor's opinion.

     
    Old 03-11-2007, 09:15 PM   #5
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    Re: Forteo Results after 24 Months

    Taape
    I am done with Forteo in 3 months, and am thinking about what next. Is Boniva the only choice for the infusion, or are there others? How often is it given and are the chances of jaw issues increased with the infusion bisphosphonates or does that just apply to cancer patients who are getting massive infusion amounts as opposed to the smaller doses for osteo patients? When I see my doc in June, I know he will go over my options along with articles showing research and documented information to help me decide, but I thought maybe I should get a head start. How much improvement did you have when you were halfway through the forteo? I look forward to hearing your next results as well as many others on this forum who will be coming to the end of our time on Forteo. I think about how many new choices are out there for us as opposed to the people who were diagnosed long before there were any promising options! Good luck.
    Trail

     
    Old 03-12-2007, 05:21 PM   #6
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    Re: Forteo Results after 24 Months

    Trail,
    I think the doctor mentioned other bisphosphonates that come can be taken by IV infusion and all seem to have the same side effects. They may just be choosing one, Boniva, because it's in their formulary or something, not sure. I started out with a -3.1 T score in the spine and after a year was at -2.5 or -2.6. I haven't had a DEXA for more than a year. I'll post my scores. It would be good to look ahead as to what your options are. It still seems like the options are limited.

     
    Old 03-12-2007, 08:26 PM   #7
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    Re: Forteo Results after 24 Months

    Quote:
    Originally Posted by taape View Post
    CAbones,
    Congratulations on your improvement in bone density in your spine. Didn't you feel that the two years on Forteo went by quickly, I did. I have a DEXA coming up in a few weeks and I'll post my T Scores then. I've been off of the Forteo for almost 6 months just using Calcium and Vit D, eating foods with dairy, and exercising. My doctor also wants me to use Boniva by IV infusions and I'll have more information soon to make a decision. I did ask about Evista and was told that the medication is too weak for severe osteoporosis and would be a waste of time. Who knows really, that's only one doctor's opinion.
    Hi Taape,

    I am finishing my course of treatment with Forteo this week. I had an endo appointment for Thursday to see where we go from here. Unfortunately, I have a very sick elderly friend, so I had to cancel the appointment to stay available to help. I couldn't get another appointment until the end of April. I was worried about not immediately going on another drug to maintain my gains with Forteo (went from -3.5 spine to -2.1 spine as of late December. Hip stayed close to the same - went from -2.4 to -2.1, I can't exactly remember). Anyway, did your doctor say anything about waiting to start a new treatment? I'm scared about losing all of these hard won gains, although I certainly plan to keep taking calcium and Vitamin D. I'm hoping a month's delay won't matter. You haven't started anything new yet, so I guess your doctor isn't worried about you losing gains? Thanks for any info.

     
    Old 03-12-2007, 09:48 PM   #8
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    Re: Forteo Results after 24 Months

    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

     
    Old 03-13-2007, 07:12 PM   #9
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    Re: Forteo Results after 24 Months

    Quote:
    Originally Posted by trail View Post
    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
    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.

     
    Old 03-13-2007, 07:53 PM   #10
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    Re: Forteo Results after 24 Months

    Yes, this board is a great resource. I remember when I started Forteo also and it was wonderful to be able to get information and support here. Spinewhine, it's good to hear from you.

     
    Old 03-14-2007, 08:17 AM   #11
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    Re: Forteo Results after 24 Months

    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.

     
    Old 03-14-2007, 08:43 PM   #12
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    Re: Forteo Results after 24 Months

    Tonight I'm going to bed without a Forteo shot. Yesterday I used up my last pen. It feels a bit weird to know it's over. When I started, I couldn't believe I was going to have to give myself a shot every day for TWO YEARS. Time really does fly.

     
    Old 03-14-2007, 10:18 PM   #13
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    Re: Forteo Results after 24 Months

    spinewhine,
    I am almost there. I have 2 months left and I know exactly what you are saying. I never imagined I would be able to do it either, and to be honest, as good as forteo has made me feel and with all the protection it has given me, I am actually going to miss it. I can't believe I am saying that!(I am looking forward to being able to wear shorts again and not be embarassed by my shot marks). The biggest challenge now is maintaining all the gains from the last two years. I am so glad there are several of us who are facing this same challenge, and I hope we continue to communicate all the information we get individually with each other so we can make the best decisions for the next stage of our treatment. Keep in touch.
    Trail

     
    Old 03-15-2007, 12:21 PM   #14
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    Re: Forteo Results after 24 Months

    I definitely agree. It seems like just yesterday that I started the Forteo and was I a basket case the first few times; I really didn't think I would be able to do it; of course now it's a piece of cake and I'm sorry that it's about to come to end especially since I'm not sure what the next step should be.

     
    Old 03-15-2007, 01:04 PM   #15
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    Re: Forteo Results after 24 Months

    Can you all let us know what your next step will be??? Hope you all got great gains with Forteo. Funny that you would miss a drug, but I know I'll feel the same way when the time comes.

     
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