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    Old 04-10-2006, 05:24 PM   #1
    ThinBones
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    MD visit, Forteo follow-up info

    I went to see the MD last week. Some notable info. No one on Forteo has had a report of bone cancer. I was glad to hear that. No three months on, three months off yet either, not glad to hear that. I was hoping that would be farther along in testing. She also said I would HAVE to go on some kind of biphosphonate after the Forteo to avoid bone loss, which I certainly want to do. I had a horrible time with Fosomax but we will see, there are other alternatives. She also said that the biphosphonates act differently on bone built by the Forteo and it continues to improve which I found interesting. MD also said there is some drug coming down the pipeline in about two years that looks promising. Would love to know more but she did not elaborate. So, that's the news!! Hope it sounds promising.......

     
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    Old 04-10-2006, 07:06 PM   #2
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    Re: MD visit, Forteo follow-up info

    Can you be specific information on what's coming next for new medications? If you can find out more information over the phone or at a later app't let us know. No matter what I won't be able to take biophosphates because it's so hard on the stomach. So I'm wondering already what my options are. Even if they work differently on the bone after the Forteo the option is out for me. I'm not sure what to do. I do have a friend who says they may be able to take Forteo for an extra year that would total to 3 years instead of 2. Maybe this is possible. We'll see.

    Last edited by taape; 04-10-2006 at 07:08 PM.

     
    Old 04-11-2006, 05:34 AM   #3
    ThinBones
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    Re: MD visit, Forteo follow-up info

    Taape - Yes I am worried too as I had horrible joint pain with Fosomax and I cannot imagine trying to take it again and I also have had to take Zantac every since I took Fosomax..maybe coincidental but I am not so sure....... There is an I.V. biphosphonate that you can also get but know nothing about that. It does bypass the stomach though. I was also hoping that they would extend the Forteo past two years but we will all have to see!!

     
    Old 04-11-2006, 12:10 PM   #4
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    Re: MD visit, Forteo follow-up info

    Quote:
    Originally Posted by ThinBones
    MD also said there is some drug coming down the pipeline in about two years that looks promising. Would love to know more but she did not elaborate.
    I wonder if she was talking about Strontium Ranelate, AKA Protelos? That's the only treatment I can think of that isn't a biphosphonate or PTH. I just don't know whether it's being evaluated in the USA. I know it's already approved in 30 countries including Germany, the UK, Spain, Italy, France and Ireland. I haven't been able to find any mention of Servier applying for approval by the FDA.
    __________________
    Dx 5/04, age 49: Spine -3.0, Hip: -1.9
    5/05: Spine -2.7, Hip -2.1
    Current treatment: Evista since Oct 2004

     
    Old 04-11-2006, 03:10 PM   #5
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    Re: MD visit, Forteo follow-up info

    One of the IV bisphosphonates is pamidronate (Aredia). I've had one infusion before Forteo was approved and we opted to go w/Forteo instead. No noticeable side effects other than some minor tingling of the lips and wrists. The drip was slowed from a 2 hour drip to a 4 hour drip and no more tingling. That's it. I'll go back on IV pamidronate when my 2 years of Forteo is up. I have Crohn's disease so there is no way I would even TRY an oral bisphosphonate. The pamidronate caused no digestive problems at all.

     
    Old 04-12-2006, 09:16 AM   #6
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    Re: MD visit, Forteo follow-up info

    As I posted on another thread, I had my yearly checkup and a bone density scan a few weeks ago. The doctor's office finally called yesterday regarding the bone density scan and left a message stating that the scan showed "some improvement" but the doctor wanted to switch me to Fosamax. I haven't gotten the actual scores as yet. I am to call to get a prescription. I don't understand why she wants to do that. I just finished the first year on Forteo and assumed I would be on it another year; she said nothing about changing it when I saw her a few weeks ago; she even refilled my prescription for Forteo and I have just received a 3-month's supply. And if there is a good reason to go off Forteo I don't understand why she wants me to go on Fosamax. I had been on Actonel for a year before going on Forteo and had no problems with it. The nurse said to call if I had any questions -- do I have questions!! I am about ready to say forget it and not take any medications. I think I will wait to call tomorrow to give me a chance to go over the information I have on the various treatments and maybe do a little more research and get my questions in order. Arrgh!!!

     
    Old 04-13-2006, 08:33 PM   #7
    PikaB
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    Re: MD visit, Forteo follow-up info

    Quote:
    Originally Posted by newbones
    I am about ready to say forget it and not take any medications.
    I hope you have learned why your doctor wants you to discontinue Forteo (and if you feel the reason is invalid, try to convince him you still want it). But please don't stop all medications. In one study, ("The importance of bisphosphonate therapy in maintaining bone mass in men after therapy with teriparatide.") it was found that after completing the 18-to-24 month Forteo (teriparatide) therapy, those who then switched to bisphosphonates maintained (and increased) the BMD gains achieved from taking Forteo, whereas those who did not take bisphosphonates began losing the BMD gained from Forteo. See the chart at
    [url]http://www.public.asu.***/~bruce/pics/**.jpg[/url]

    I just began taking Forteo this month, and already I am looking ahead. I have no wish to take bisphosphonates after my 18-to-24 months of Forteo, but unless an alternate method is found of keeping the BMD gained by Forteo, I will really have no choice.

     
    Old 04-19-2006, 09:33 AM   #8
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    Re: MD visit, Forteo follow-up info

    PikaB,
    Thanks for the encouragement. And you are right, according to my doctor, that taking biophosphonates after Forteo is necessary to maintain bone and prevent further loss. I do intend to look at the site you mentioned.

    Anyway, after playing phone tag for a couple of days, I finally did talk to my doctor this morning. The reason she decided I should go off Forteo was that my bone density scores were much improved. Last year my spine was -3.3; this year it was -.3. Due to that she feels that it isn't necessary to continue with the "big gun" (Forteo). She did agree that I should continue with the Forteo that I have which will give me another 2.5 months. She also agreed that I could then go back on Actonel since I had no problems with it before. I do not like the idea of having to take it long term, but I certainly don't want to lose what I have gained.

    The good news for all of us that have been taking Forteo is that it evidently has made a difference. I also like to think that diet and exercise have played a part as well. I had hoped for some improvement with the Forteo, but did not expect this much after a year. I hope everyone else can have similar results.

    Last edited by newbones; 04-19-2006 at 09:34 AM.

     
    Old 04-19-2006, 02:54 PM   #9
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    Re: MD visit, Forteo follow-up info

    Wow!! That was a heck of a major improvement in bone density. May all of us Forteo users be so fortunate!!! What else did you do besides the Forteo? Exercise? Calcium? Vitamin D? Strength training? What?

    Anyway, Congratulations on your good fortune and bone density improvement. Continued good luck to you on the Actonel as well. Thank you for sharing your good news and giving hope to those of us still waiting to have been on Forteo long enough to learn any results.

     
    Old 04-19-2006, 06:49 PM   #10
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    Re: MD visit, Forteo follow-up info

    Did you mean -.3 down from -3.3? Wow that's improvement all right. I think normal is +1.0. How long were you using the Forteo and what was the cause of your osteoporosis?

     
    Old 04-20-2006, 07:16 AM   #11
    newbones
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    Re: MD visit, Forteo follow-up info

    taape and CrohnieToo,

    Last year my spinal t-score was -3.3; this year it was -.3. My hip didn't show as much improvement. Last year it was -2.1; I don't remember what it was this year but a little better. The doctor is supposed to send me the actual results.

    I had been on Forteo for 12 months when I was tested. I have a little more than a 2-month supply and the doctor said to go ahead and finish that, then to go back on Actonel. I'm not real happy about having to go back on it, but I don't want to lose what I've gained. Fortunately, I had no problems with it before so I don't anticipate any this time.

    Besides the Forteo, I have been taking Calcium supplements that also contain some Vit. D and a multi-vitamin that has some calcium and Vit. D as well. I try to eat a healthy diet and exercise. I do Jazzercise which incorporates aerobics and strength and flexibility training; I try to go 3 times a week, but am usually doing pretty good to get there twice. Otherwise, I am pretty active -- yardwork, gardening, taking the stairs at work instead of the elevator, etc.

    I don't know what caused my osteoporosis, except that I am 59, postmenopausal, and chose not to take hormones. My doctor, as part of a routine checkup, suggested that I get a bone density scan which showed osteoporosis. It was quite a shock. I suspect my mother, who is 83, has it but she hasn't been diagnosed. She is not hunched over but she has shrunk in height considerably; I guess in the past that was accepted as a natural part of aging.

    I do hope that everyone else on Forteo will have good results and that this will help us all in the long run.

    Last edited by newbones; 04-20-2006 at 07:19 AM.

     
    Old 04-20-2006, 07:28 AM   #12
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    Re: MD visit, Forteo follow-up info

    Thanks again for sharing, NewBones. Hope springs eternal. My 1st anniversary w/Forteo isn't until mid-August. And yet again, my DEXA will be done on still another DEXA scanner. Not one of mine has been done on the same scanner much less by the same tech (which is the ideal). However, we just had a new imaging center open in our area which has all the latest and greatest imaging equipment including the digital bone density scanner (so far the only one in the state) and so I've decided that I will have my density scan done there from now on. Maybe then next year I will FINALLY have two density scans done on the same scanner!!!

     
    Old 04-20-2006, 11:58 AM   #13
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    Thumbs up Re: MD visit, Forteo follow-up info

    Quote:
    Originally Posted by newbones
    Last year my spinal t-score was -3.3; this year it was -.3.
    From -3.3 to -0.3 in one year is certainly spectacular results (I never heard of anyone doing that well). At that rate, your final two month supply of Forteo will probably boost you into the positive range. Fantastic.

     
    Old 04-20-2006, 04:04 PM   #14
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    Re: MD visit, Forteo follow-up info

    Congratulations, newbones, on your spinal t-score! Although I'm not on Forteo I am interested in everyone's results. I am on Actonel having a spinal t-score of -3.1. Did your doctor tell you how long you'll have to be on Actonel? Do you think it might be a forever thing?

     
    Old 04-21-2006, 02:48 AM   #15
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    Re: MD visit, Forteo follow-up info

    greentree,
    I have been on Actonel for 15 months and just had a dexa scan a few weeks ago. I went from osteopenia to osteoporosis. Mine is in my spine. I am kinda discouraged about the Actonel, but my Dr. just said to keep taking it and to make sure that my calcium has vitamin D in it. (which my current calcium didn't.) I am to get another dexa scan in a year. My back hurts a lot, also my neck. Does anyone know if osteoporosis actually causes pain?

     
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