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    Old 09-06-2007, 07:02 AM   #1
    Jersey55
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    forteo after actonel

    Well, I finally got up the nerve to post. I'm 54 and have been on actonel for two years. I was diagnosed with osteo 2 years ago. -3.1 in spine. Meno is done. After the first year on actonel, I basically stayed the same . This year Dex showed a -3.2 -- So the nurse practictioner who specializes in OSTEO for the medical group suggested Forteo. Of course, I immediately hit ****** to see what I could find out. I was fortunate to not have any adverse effects from Actonel. Does anyone know if the Forteo will have ANY positive effects after having been on Actonel? I walk, lift weights, eat fairly decently (although I do like my red wine). This is the last stop I guess, to keep me from ending up like my Mom, who was in a good deal of pain the last 10 years of her life. I read somewhere about Forteo after Fosamax not being as effective. Unfortunately, this sounds reasonable because of the long half life. So how could Forteo build bone if the leftover Fosamax is still keeping everything on hold...... Does anyone have experience/info on this. Thanks in advance - it is awfully nice to find this site...

     
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    Old 09-06-2007, 11:15 PM   #2
    osteoblast
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    Re: forteo after actonel

    Welcome Jersey!! You have come to a great place to get information and support. I am just ending my day, but I wanted to at least welcome you on the first day of your posting on this board. Tomorrow morning I will be able to reply to your question at some length. But, a quickie response to your question is that at least one poster on this board had superb results in a situation like yours. She was on Actonel for one year before her forteo treatment. Then after 12 months on forteo , her dexa results showed stunning improvement. I am pretty certain that she will share her story with you, but tonight I wanted to let you know there is definitely hope. See you tomorrow.

     
    Old 09-07-2007, 08:00 AM   #3
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    Re: forteo after actonel

    Thank you for the response and welcome. I see you post a lot. I may have found what you referred to yesterday, but Im not sure. There are so many threads to read through! I havent gotten a call back from the nurse about my forteo yet, and I must say I want the call, but am not looking forward to the shot (which probably isnt too bad) or the possible side effects - so I havent called her. I was very fortunate to not have any side effects with actonel (other than whatever it did to me that I don't know about yet). So much info and so many things to think about... but action seems better than nothing....except for the black box warning..... I guess this just goes on my orig thread..... obviously this is my first shot at one of these blogs/threads whatever ..... till next time

     
    Old 09-07-2007, 09:48 AM   #4
    osteoblast
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    Re: forteo after actonel

    Jersey-Hi, yes I do post a bit here. I love the mutual aid aspect of the boards. Plus there is also a fun and entertaining aspect. I have to curb my time on the board, because sitting for long periods is definitely not as good for the bones as moving .

    I wanted to also bring up to you that a new way of treating osteoporosis seems to be alternating a bisphos (fosamax, actonel,etc) with forteo. My doc seems to want to do a 12 month on forteo, 12 mo on bisphos. and then repeat. As I have just completed the approx 12 months, this is what I am trying to wrap my mind around . It's a little different than your question but not too different as it entails bisphos for a year and then forteo again. As I say this seems to be the direction the docs are going as evidenced also recently by postings from both trail and spinewhine.

    Perhaps you read the recent thread that I started about my dexa results. We are basically the same age and meno situation. I am 55. I only took a bisphos- fosamax for 7 weeks before the forteo. So a little different there.
    I have moved up my walking over the past 4 years from approx 3 miles a day
    to now approx 9. I say approx because sometimes it is more. I do the 9 miles in two stints. I too weight lift , some resistance band and since early this year tai chi. I LOVE TAI CHI. I think there are certain moves there that really work the hips like flying goose in a way that is very different from any normal move and probably very beneficial. Also look on this board about unipedal standing. You can use the board search mechanism.

    Everything you are doing sounds very good, except perhaps the wine drinking.
    Perhaps you should do some research on osteoporosis and alcohol. I recall that alcohol is not good for your bones. I do know alot of people like red wine for heart health but with exercise and dietary changes as well as meditation techniques for stress relief why bother if it hurts the bones.

    A big topic at this board is also vitamin d -- be sure to have your levels checked periodically esp if you go on forteo which eats up your vit d .

    And getting back to the forteo--the shots , particularly with the 3/16th needles are a piece of cake. ( My first doc said use the 5/16th , later found out this was really not needed . The 5/16th needles have a more serious look about them.The 3/16th look like nothing much.) It is just not a big deal and then of course you feel good because you are doing something.
    I am on my way out now, to get the bones moving. I hope that I answered some of your concerns. Let me know if you have any more questions.

     
    Old 09-07-2007, 12:04 PM   #5
    Jersey55
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    Re: forteo after actonel

    hi osteo, yes I have just been reading more about the alternating plan forteo/Bisphosphonates. I am definately going to ask about that when I go in. I also have notes on vit D. Mine is ok for the moment (I think) according to the lab results. I am trying to determine if I should try and find a Dr. that specializes in osteo. However, I can't seem to locate one that is close. Do you think a board certified nurse practitioner that specializes in OSTEO is ok in conjunction with my regular GP? Do you all have specialists? Of course I would like to have a head of Osteo Dept taking care of me. Guess I better get walking too, I need a few more miles per day to keep up with you

     
    Old 09-07-2007, 01:59 PM   #6
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    Re: forteo after actonel

    Hi Jersey~~Welcome!!! No need to hesitate posting here, we're all friends, and would love to hear what's going on in your life.

    I took Actonel for a little over a year and went from -3.6 spine to -3.4, 14 months later. My dr decided to put me on Forteo, and luckily I haven't had any side effects. I've been on Forteo since April of 2006, and my last dxa was -1.2 spine and -1.6 hip (neck/trochanter -2.3). My first 2 scans were on QCT's which tend to over estimate the t-score so, I really don't know how much I've improved except to say that it's at least a whole SD point or more. All of these scans have some variability in them, and I have arthritis, and titanium rods/screws which can alter the score.

    I'm 53 and went through early meno and many back surgeries, so those two things combined hasn't helped the bone situation much, but I'm doing much better now on Forteo. I've had some fractures and have my dr check my spine once a year for any compression fx's. Checking your height is more important than you might think, so keep track of that. My grandmothers lost a lot of height to compression fx's and there are minimally invasive things that can be done to restore that.

    I can't think of a single reason why you shouldn't give Forteo a shot. If you turn out to be one of those with side effects you could always stop it. Does your insurance cover Forteo? The biggest draw back on this med is the price and a lot of insurances won't pay, so if yours will, try it out, what do you have to loose.

    Exercise and bone vits are very important and it is important to keep track of your vit d and calcium. If you haven't been tested for any seconday causes of osteo you might consider that. I'm not sure that it's completely necessary to have a specialist, but there again if you have the type of insurance that would allow a Endo, Rheumy or Mineral Metabolism dr you could get a second opinion. Most of the secondary causes of Osteo would be related to asborption problems and thyroid/parathyroid problems.

    If you have any more questions, fire away...

    Here's a good link on Forteo, if you haven't read it yet.

    Welcome aboard

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

    Last edited by DesertBloom; 09-07-2007 at 02:51 PM.

     
    Old 09-11-2007, 06:52 AM   #7
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    Re: forteo after actonel

    Desert Bloom, that sounds absolutely awesome in terms of improvement after the Forteo. Thanks for the response, I understand everyone is different, but at least the drugs are similar and it is nice to hear (from someone other than drug co PR that this stuff might actually work). thks again... be well

     
    Old 09-11-2007, 03:46 PM   #8
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    Re: forteo after actonel

    Jersey- Hi again. I am glad that DesertBloom shared her experience with you. As you may have read an earlier thread I started regarding my slight improvement after 11 months of forteo, I think you may also want to read the Osteonecrosis thread particularly the last two pages. I am beginning to think that the 7 weeks I was on fosamax before forteo may have delayed my response. In the article we are discussing , rats who had bisphos treatment for only 16 wks. had a delayed reaction to forteo. So, while DesertBloom did have superb results, I just thought you should be aware that researchers found that such a short period significantly delayed response. Just something to keep in mind as you go forward.

     
    Old 09-11-2007, 10:43 PM   #9
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    Re: forteo after actonel

    Osteoblast,
    You took Fosamax for 7 weeks prior to starting Forteo? Was it right before or was there a break in time? I took Fosamax for 3 weeks before starting Forteo and waited about a month due to waiting for insurance to agree to pay. I had a good response to Forteo but then lost all gains quickly after the two years.

     
    Old 09-12-2007, 10:08 AM   #10
    osteoblast
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    Re: forteo after actonel

    I took fosamax 7 weeks, then 7 weeks off , then forteo. I can't imagine waiting 7 weeks would make any difference though, as the half life of fosamax is over 10 years. And, the rat studies said treatment for 16wks with alendronate(fosamax )resulted in a 6-12 month delayed reaction to forteo.

    Of course everyone is different. And, your response to forteo was good, and others as well. But in my case with my bone markers being tested I showed little or no reaction to forteo for about 7 months and then the bone markers have shot up dramatically. My doc is saying that my now reaction with very high bone markers is a result of the forteo. As I said previously he wants me to stop now on the forteo, as he does with most of his patients at one year.
    But in my mind , I say I am not like others on forteo ,with my delayed response. Why stop now if I have a good response going and switch to a bisphos. Do you see what I am saying?the doc doesn't want to change the plan. If I were then on bisphos for a year and back to my last 12 months on forteo, maybe I couldn't even get up and running on forteo for another 7 months plus as I would be on bisphos for a full year not just 7 weeks.
    We need to hope and pray that something better than the bisphos drugs comes out for us. Maybe it is denosumab or strontium. I just wish the docs would have taken the ostenecrosis more seriously and seen the flaw with the bisphos. drugs and got to work on something better a long time ago.
    What is the status of your situation now? What will you do?

    Last edited by osteoblast; 09-12-2007 at 10:10 AM.

     
    Old 09-12-2007, 05:00 PM   #11
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    Re: forteo after actonel

    OSTEOBLAST :

    Hi, montesflus here. If you would feel better by continuing on forteo, rather than going on a bisphosphonate again, then, if I were you, I would do just that. Continue with the forteo. I don't know how happy you are with your present doc (who suggests you switch back to a bisphosphonate), but, surely, he/she can't force you to do something you're not happy with, or that makes you feel uncomfortable with this form of treatment. Perhaps switch to another doc But anyway, in my mind (and I'm pretty dumb) it just seems to make sense that owing to the fact that bisphosphonate meds work in such a different way to forteo, that this could, indeed, somehow prevent forteo working in a satisfactory manner after being on a bisphos med. On the other hand, maybe it does, for some, but certainly not everyone. Osteo, I'm sure you know far better than me the differences in the way these meds work (forteo promoting new bone growth, while the bisphos doing just the opposite) - simplified thinking, but more or less to the point

    I don't know if your insurance pays for you to continue on forteo, but if it does, if I were you, I'd go for that option, considering the improvements you've made so far.

    keep well, montesflus

    Last edited by montesflus; 09-12-2007 at 05:00 PM.

     
    Old 09-12-2007, 06:50 PM   #12
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    Re: forteo after actonel

    My insurance gives me the option for self referral so I'm going to see a bone specialist that was recommended to me. It's a small independent office not connected with a major medical center however I was told that with my present scores (worse than when I started Forteo) that the doctor may recommend a second course of Forteo. If a doctor recommends this then insurance will pay. I hope in another 2 years there are more options. It seems like the pharmacuticals went nuts with bisphosphonates but forgot about other options.

     
    Old 09-12-2007, 10:19 PM   #13
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    Re: forteo after actonel

    Montesflus- We are thinking along the same lines. I will let you know how it plays out.

     
    Old 09-12-2007, 10:24 PM   #14
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    Re: forteo after actonel

    Taape-Glad to hear you will be seeing a new doc soon. Best of luck and let us know.
    When you were on the two years forteo, when did you have your dexas and do you recall how your numbers went? What I am getting at is where did you see your progress, did you have a dexa at 12 months on forteo , then at 24 months? Or how was it. While my progress at 11 months wasn't much, maybe I will respond later. I have read on the board that some people didn't have much change in the first year but change in the second.

     
    Old 09-19-2007, 07:07 AM   #15
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    Re: forteo after actonel

    Goodness, you all are going nuts on this thread. I still havent gotten my Forteo, so now I'm trying to set up an appointment with an Endocrinologist who is attached to an Osteoperosis Center and osteo is one of his "interests". However, no apptmts till November! I just want to have someone who seems to have more of a clue about Osteo than my GP. I've been off Actonel since April. I cant figure if this is hurting or helping me with regards to going on Forteo.

     
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