It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Osteoporosis Message Board

  • Results after 24 months of forteo

  • Post New Thread   Closed Thread
    Thread Tools Search this Thread
    Old 05-29-2007, 09:56 PM   #1
    trail
    Member
    (female)
     
    trail's Avatar
     
    Join Date: Sep 2006
    Location: los gatos,california,usa
    Posts: 82
    trail HB User
    Results after 24 months of forteo

    Hi all
    Just got back from my doctor's visit and as promised, I will discuss my results. I hope this comes out clearly, because I am surprised at the results of my dexa. My first year on forteo, my spine improved from -4.2 to -3.7, even though my hips didn't change much from -3.0. I expected to have even more gains this year and I stayed the same. I have been feeling so much stronger, relatively little to no back pain and working out almost everyday. I asked my dr. why he thought I didn't improve any more and he didn't have any answers. I made no changes this year in anything, still taking mega vitamin D by prescription, my diuretic to get my body to absorb calcium, calcium citrate supplements(with D and Mag), a really good, healthy diet, weight bearing work with free weights and aerobic running etc. At this time, he told me to keep taking the forteo as long as my local pharmacy would renew it and to come back in 6 months. If I can't continue the forteo he said my only choice was Fosamax and that was it. I am not sure where to go from here-I really trust him and he has always been totally on top of figuring out what was going on with me, and if I hadn't gone to him right away after my first dexa, I don't think anyone else would have suspected my secondary factor of calcium malabsorption and fix it like he was able to do. Does anyone know if the results are better with the bisphosphonates after being on Forteo? All I keep reading is that the bones get weaker even though the density increases. I am wondering if that is because the bones were weakened and then the bisphos were taken and that if you started with stronger bone it would fill in the interior without weakening the bone itself. My dr. mentioned that you only get about 1-2 months max protection once you stop the forteo, so the clock is ticking for me to make a decision. I never took any bisphos, just started with forteo, so I am very apprehensive given all I hear on this board and elsewhere even though I know it works for some people as well. I just am so frustrated that I am doing all the right things and still not getting the results I so badly want! I am thinking about getting a second opinion and then making a decision based on that. If someone else came up with the same game plan as my dr. I guess I would have to stop there and make my mind up after that. Sorry to go on like this but I had to get it off my chest and where better to do that then on this board that has given me so much support and info over the last few years. I know many of you are finishing up your forteo and I think it is so important that we all share our plans with each other. Thanks for any ideas or feedback.
    Trail

     
    Sponsors Lightbulb
       
    Old 05-30-2007, 04:12 AM   #2
    PikaB
    Senior Member
    (male)
     
    Join Date: Apr 2006
    Location: Tempe, AZ
    Posts: 216
    PikaB HB User
    Re: Results after 24 months of forteo

    Quote:
    Originally Posted by trail View Post
    Hi all
    ...Does anyone know if the results are better with the bisphosphonates after being on Forteo?...
    Yes, the best BMD increases (statistically in clinical studies) come from Forteo followed by bisphosphonates. But if you go that route, perhaps you could ask for something else besides Fosamax, since it has such a long half life.

     
    Old 05-30-2007, 12:04 PM   #3
    osteoblast
    Senior Veteran
    (female)
     
    osteoblast's Avatar
     
    Join Date: Oct 2006
    Location: u.s.
    Posts: 1,679
    osteoblast HB User
    Re: Results after 24 months of forteo

    Trail-

    The forteo regimen is difficult,we put alot of hope into the project and also alot of effort with exercise. I have only been on the forteo now for about 8 months. I have noticed ,however, a transition in my thinking. I believe that I am trying to arrive at a balanced perspective in case down the line the bmd doesn't show the increase that others have seen. So, I don't know if this will be of any help to you but-this is how I look at it more and more:

    1.Forteo is now the best thing out there so we are giving it a chance.

    2. We are not pinning all hopes on forteo , we are looking at our general health, nutrition and also making life style changes that should truly help us in so many ways. With our very special support system on this board we are examining many aspects of bone health. We are looking at vitamin d , calcium and absorption issues. We have taken the time and effort to look at what supplements to take and look at what we eat. We are walking very seriously ( some 4-6 miles a day) , weight lifting, balance exercise etc. Many of us have made a promise to ourselves that we will continue with this through the years. We have probably made a stronger commitment to these life style changes because of what we are facing. Certainly these changes are helping us in so many many ways even if it doesn't show up in the bmd- there is also bone strength and balance that we are working on. We are getting stronger and we are probably affecting those around us to have healthier life styles.

    3.Medical research is progressing. Who knows what there will be down the line? Osteo is so prevalent and the drug companies are highly motivated(financially) this could mean something good for us. Even if we have to take the bisphosphonates for some time , some are thinking that newer better drugs may be out soon. Some are really thinking that denosumab could be coming out within a year or two and that it would be a significant improvement. Time will tell. And, there are so many other things that we have read about and things we have not read about that may offer hope.

    I can only speculate but I would think that you went to your recent dexa with a much stronger body than you had two years ago before forteo. It's a pity that that is not measured as well. You have done many things to improve your situation. To me the success is in the effort that you have brought to this project, our measure of success cannot be tied only to the bmd.

    Don't lose hope now, continue to put one foot in front of the other and keep on keepin on. Continue to do all those good things that you are doing and know your osteo mates are doing the hard work day by day as you are.

    I wish I could be of help to you regarding your next move. This is a difficult issue now because options seem so limited. I have read , however, that the gains with a bisphosphonate are increased if you have just finished the forteo. That there is some sort of additive effect. If you look at pub med at the NIH site you should be able to find this study. As Pika B says maybe there is a better option than fosomax, one with a shorter half life. Please let us know how you are doing and what you decide.

    Last edited by osteoblast; 05-30-2007 at 12:16 PM.

     
    Old 05-30-2007, 04:50 PM   #4
    taape
    Senior Veteran
    (female)
     
    taape's Avatar
     
    Join Date: Jan 2005
    Location: California
    Posts: 2,704
    taape HB Usertaape HB User
    Re: Results after 24 months of forteo

    Trail,
    I know your dissappointed but at least you had some improvement and know exactly what it was. Any improvement is positive. At least your doctor says that you can continue taking Forteo as long as the pharmacy keeps renewing it. What exactly does that mean? Will the doctor still write orders for Forteo? Mine won't as they are going strictly by the FDA guidelines. Some doctors will and some won't. I'm tempted to call around to find a doctor that would order Forteo for longer in hopes that either a new medication is approved especially the PTH spray or patch. What comes to mind is that taking hormones are a risk whether it's female hormones (which I also can't take) or PTH to treat osteoporosis.

    It is worth getting a second opinion about what to do next. I did that and both doctors recommended IV bisphosphonates since I can't take them orally. It's almost not fair that they have Forteo available which helps patients and then it's just for a limited time frame when many of us will have life long osteoporosis issues. I suppose if someone has a secondary reason for bone loss then Forteo may help enough to get them back on track. I think it was osteoblast that suggested trying to get into an Open Access part of a clinical trial for PTH. I did look it up at the FDA website and it seems like this is for cancer patients and those without any other options. I may be getting close to zero options. For whatever reason just taking Calcium and exercising is not enough to even maintain the bone density I gained, and I lost alot within 6 months. I just wonder if the doctor's prescribing these bisphosphonates would take the medication themselves. I'm starting to get quite worried about not being on medication but don't want to take the risk and I can't stop the medication every time I need dental work.

     
    Old 05-31-2007, 10:04 PM   #5
    trail
    Member
    (female)
     
    trail's Avatar
     
    Join Date: Sep 2006
    Location: los gatos,california,usa
    Posts: 82
    trail HB User
    Re: Results after 24 months of forteo

    Thanks Pika, Osteoblast and Taape for your replies.
    It looks like my dr. will continue to write the scrip for Forteo, but depending on what the dr. that I am getting a second opinion from says, I might not take him up on it. I have faxed my info to the new dr. and hopefully I will get an appointment soon because my time on Forteo will be over in July. Technically I started June 10,2005 so I should be done next week, but I took a month holiday in January,2007, so I guess I could go one more month to total 24. If I really have to take a bisphos I would rather try Actonel first and I am wondering why my dr. said Fosamax first. Are there studies out there that have proven it works better than Actonel? I know Boniva is the newest and I am not sure whether there are good studies out on it yet. I am still puzzled about my recent scores, but I appreciated all of your words of encouragement and wisdom and I am trying to be grateful for the fact that I FEEL so much stronger and am not experiencing the intense pain I had 2 years ago. I will keep you updated after I see the next doctor.
    Trail

     
    Old 05-31-2007, 10:39 PM   #6
    taape
    Senior Veteran
    (female)
     
    taape's Avatar
     
    Join Date: Jan 2005
    Location: California
    Posts: 2,704
    taape HB Usertaape HB User
    Re: Results after 24 months of forteo

    Trail,
    I'd sure travel down your way to see your doctor if I could get back on Forteo again. Are you seeing a Dr. who's in his own practice? My doctor is at a Univeristy Hospital and they follow FDA guildelines so 24 months only. My doctor seems to be pushing Boniva rather than Fosamax or actonel. Maybe because it's the newest.

     
    Old 06-01-2007, 09:40 AM   #7
    trail
    Member
    (female)
     
    trail's Avatar
     
    Join Date: Sep 2006
    Location: los gatos,california,usa
    Posts: 82
    trail HB User
    Re: Results after 24 months of forteo

    Taape
    Yes, my doctor is in practice by himself. He is an internist, but specializes in osteporosis and does research for osteo as well.
    Trail

     
    Closed Thread

    Related Topics
    Thread Thread Starter Board Replies Last Post
    Forteo- Slow to show results osteoblast Osteoporosis 9 10-04-2007 07:37 AM
    Shewolf's latest Dexa scan results shewolf75 Osteoporosis 6 08-06-2007 08:25 AM
    Good results after a year of Forteo Emptybonz Osteoporosis 9 05-24-2007 07:27 PM
    Forteo Results after 24 Months CABones Osteoporosis 32 04-05-2007 07:07 PM
    Forteo results after 12 months pingo Osteoporosis 13 03-21-2007 04:36 PM
    Positive results for Forteo...yeah!!! ThinBones Osteoporosis 7 04-06-2006 02:49 PM
    Forteo vs Alendronate Results CrohnieToo Osteoporosis 3 05-31-2005 04:38 AM




    Thread Tools Search this Thread
    Search this Thread:

    Advanced Search

    Posting Rules
    You may not post new threads
    You may not post replies
    You may not post attachments
    You may not edit your posts

    BB code is On
    Smilies are On
    [IMG] code is Off
    HTML code is Off
    Trackbacks are Off
    Pingbacks are Off
    Refbacks are Off




    Sign Up Today!

    Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

    I want my free account

    All times are GMT -7. The time now is 09:47 AM.





    © 2021 MH Sub I, LLC dba Internet Brands. All rights reserved.
    Do not copy or redistribute in any form!