tomatojuice
09-08-2006, 09:54 PM
Does anyone know what happens after two years of forteo? Do you have to take a biophosphate, or can you pursue the natural route to bone health?
Sponsor
DesertBloom
09-08-2006, 11:14 PM
tomatojuice: I was told that at the end of my Forteo treat. they would probably put me back on Actonel. I question this logic since Actonel only improved my t-score by .02; after over a years use. But the thinking is that you need to remain on something to combat a low t-score.
There "maybe" the option of Salmon Parathyroid Hormone (Calcitonin) but I've never taken this and believe it comes in a nasal spray and IV form.
This is a tough question, so just make sure you research as much as you can to decide what you or your dr. might want to do. I haven't heard of anyone going on Calcitonin after Forteo, so maybe it's just research I missed. But I would ask if there is any reason why you couldn't switch from on type of PTH to another.
I wish you all the best, and hope you find your answers... Just hang in there, and Good Luck...
Pam
There "maybe" the option of Salmon Parathyroid Hormone (Calcitonin) but I've never taken this and believe it comes in a nasal spray and IV form.
This is a tough question, so just make sure you research as much as you can to decide what you or your dr. might want to do. I haven't heard of anyone going on Calcitonin after Forteo, so maybe it's just research I missed. But I would ask if there is any reason why you couldn't switch from on type of PTH to another.
I wish you all the best, and hope you find your answers... Just hang in there, and Good Luck...
Pam
PikaB
09-08-2006, 11:29 PM
Does anyone know what happens after two years of forteo? Do you have to take a biophosphate, or can you pursue the natural route to bone health?
I think that studies thus far have indicated that after Forteo treatment is concluded, unless bisphosphonates are taken (which increases BMD further), bone loss will start again.
In my own case (I am on my 6th month of Forteo), I plan to try alternative methods to retain BMD after Forteo, but if the alternative methods do not work, and if BMD starts declining after I have been off Forteo for 6 months or a year, I will probably reluctantly begin bisphosphonates. Of course, with it's long half-life, Fosamax would be my very last choice.
I think that studies thus far have indicated that after Forteo treatment is concluded, unless bisphosphonates are taken (which increases BMD further), bone loss will start again.
In my own case (I am on my 6th month of Forteo), I plan to try alternative methods to retain BMD after Forteo, but if the alternative methods do not work, and if BMD starts declining after I have been off Forteo for 6 months or a year, I will probably reluctantly begin bisphosphonates. Of course, with it's long half-life, Fosamax would be my very last choice.
DesertBloom
09-08-2006, 11:39 PM
Tomatojuice: I forgot to mention, I'm a big believer in alternate health care solutions, so If you find something that works, by all means try it.
PikaB is right, if after you finish your current med, you need to continue using something to halt or at least slow down further bone loss.
PikaB: Thanks for reminding me of the possibilities of a t score going lower, which I only mentioned in a round about way by saying "to remain on something to combat a low t-score" :)
PikaB is right, if after you finish your current med, you need to continue using something to halt or at least slow down further bone loss.
PikaB: Thanks for reminding me of the possibilities of a t score going lower, which I only mentioned in a round about way by saying "to remain on something to combat a low t-score" :)
Cschneider375
09-08-2006, 11:57 PM
I was told last year that after 3 years of Forteo, you did not have to take anything. Was this misinformation?
DesertBloom
09-09-2006, 12:15 AM
I was told last year that after 3 years of Forteo, you did not have to take anything. Was this misinformation?
In all the literature I rec'd from Eli Lily, and several dr.'s is that you can only use it for 2 years because that is the only length of time testing that was done on Humans. I can't say you were misinformed, but you can call Eli Lily to confirm this, or read it in your info packet and let us know. But I've never heard of a 3 year treatment period, unless you were a participant in the original drug testing trials, and I'm not sure that matters either, but it might extend the treatment time to a period beyond 2 years, not sure. This would be interesting to know, especially if you participated in the drug trials.
HTH
Pam
In all the literature I rec'd from Eli Lily, and several dr.'s is that you can only use it for 2 years because that is the only length of time testing that was done on Humans. I can't say you were misinformed, but you can call Eli Lily to confirm this, or read it in your info packet and let us know. But I've never heard of a 3 year treatment period, unless you were a participant in the original drug testing trials, and I'm not sure that matters either, but it might extend the treatment time to a period beyond 2 years, not sure. This would be interesting to know, especially if you participated in the drug trials.
HTH
Pam
taape
09-09-2006, 01:06 AM
This is just the problem that I'm wrestling with right now - what do I take next. I'm on my last pen and the only recommendation I have so far from my doctor is to use Boniva indefinitely. I would really like to stay on the Forteo just one more year to see if my T scores could improve more and maybe by then there would be another alternative. If you have bone loss that is repairable and is only temporary then then 2 years on Forteo is great and maybe you wouldn't even need a follow up treatment.
Cschneider375, I know someone who had a Vit D deficit and didn't know it. They used Forteo and their problem is solved and no need for follow up treatment except to continue Calcium and the Vit D supplement in large doses.
Cschneider375, I know someone who had a Vit D deficit and didn't know it. They used Forteo and their problem is solved and no need for follow up treatment except to continue Calcium and the Vit D supplement in large doses.
Cschneider375
09-09-2006, 11:44 AM
I'm not using Forteo, but I met someone last year who was using it. Perhaps, she meant to say that she would be on it two years. She is definitely under the impression that once you finish it, you don't have to take anything else.
Since my husband had such a bad reaction to Boniva and I had a mild reaction to it, I will not be taking it again. I'm still trying to decide what to do.
Since my husband had such a bad reaction to Boniva and I had a mild reaction to it, I will not be taking it again. I'm still trying to decide what to do.
PikaB
09-09-2006, 02:16 PM
The results of one study was reported last year in the August 10, 2005 issue of the New England Journal of Medicine. In that study, patients who took placebo after stopping PTH decreased spinal BMD by 1.7% in the following year, whereas patients who took Fosamax after stopping PTH increased spinal BMD by another 4.9% in the following year (of course, this is in addition to the gains they achieved while taking PTH).
taape
09-09-2006, 02:26 PM
I know some patients who are staying on Forteo longer as they are making gains in bone density. I guess their doctor's are willing to take the risk and so are the patients. Since the bisphosphonates gave me such severe stomach problems I can't these although I don't want to loose bone density. Plus it is a risk putting medication in your system that stays for 10 plus years when you don't know if you will have bad side effects. It's really a delimma and not easily solved.
newbones
09-11-2006, 05:48 PM
Yes, this is a problem many of us are facing - what to do next? I have been on Forteo for about 18 months. My doctor told me in the beginning that I could only be on it for 2 years (and everything I've read supports this) and then I would need to go on something else (Fosamax, Actonel, Boniva, etc.). And I've read, as some others have posted, that you really need to take something to prevent losing any gains from the Forteo and to hopefully continue to increase the bone density. I took Actonel before without any problems so I would probably opt for that although I would prefer to not have to take anything.
DesertBloom
09-11-2006, 07:11 PM
Yes, this is a problem many of us are facing - what to do next? I have been on Forteo for about 18 months. My doctor told me in the beginning that I could only be on it for 2 years (and everything I've read supports this) and then I would need to go on something else (Fosamax, Actonel, Boniva, etc.). And I've read, as some others have posted, that you really need to take something to prevent losing any gains from the Forteo and to hopefully continue to increase the bone density. I took Actonel before without any problems so I would probably opt for that although I would prefer to not have to take anything.
Hi Newbones: I like your username, very positive outlook...
I've talked to another patient on forteo, who took it for 2 1/2 years but was then put on Aredia (pamidronate). This patient has a severe allergy to biophosphonates so her Endo had to find something that she could tolerate. So far she hasn't had any problems with Aredia I too have heard that you must continue on some medical therapy after forteo, so you don't loose any more bone. What I've read about Aredia, is that it is not just used for osteo... and as of yet I don't know if the patient I'm referring to has any other med problems that would indicate the use of Aredia, still waiting to hear if that's the case. Aredia is an IV infused med and she is getting it every 3 months, but if you read about it, there are other ways of receiving it like: daily, monthly, etc.
I guess it would depend on what your t-score is at the end of forteo to determine which option to choose, but I too was told I would probably return to Actonel, but we'll see;) I don't particularly like the stabbing pains, and stomach problems it causes.
All the best...
Pam
Hi Newbones: I like your username, very positive outlook...
I've talked to another patient on forteo, who took it for 2 1/2 years but was then put on Aredia (pamidronate). This patient has a severe allergy to biophosphonates so her Endo had to find something that she could tolerate. So far she hasn't had any problems with Aredia I too have heard that you must continue on some medical therapy after forteo, so you don't loose any more bone. What I've read about Aredia, is that it is not just used for osteo... and as of yet I don't know if the patient I'm referring to has any other med problems that would indicate the use of Aredia, still waiting to hear if that's the case. Aredia is an IV infused med and she is getting it every 3 months, but if you read about it, there are other ways of receiving it like: daily, monthly, etc.
I guess it would depend on what your t-score is at the end of forteo to determine which option to choose, but I too was told I would probably return to Actonel, but we'll see;) I don't particularly like the stabbing pains, and stomach problems it causes.
All the best...
Pam
trail
09-11-2006, 07:45 PM
I am new to this health board and thought it would be good to jump in here.
I have been on Forteo for 15 months and am also wondering what I will do after the 2 years. I have never been on any bisphosphonates, just went right on Forteo after I was diagnosed with severe osteo. Before I make a decision I want to know and research ALL my options. Since my osteo was caused by a calcium absorption problem, I wonder if my being on a diuretic along with calcium, vitamin d, and exercise would be enough after the Forteo. I would like to know more about the Aredia option and also what is the difference in the afterlife of Fosomax and Actonel? I assumed since they are both the same kind of drug that it would be the same. Is the difference due to the way it is taken or just that Actonel hasn't been out and studied for as long as Fosomax? Has anyone heard any recent information about strontium ranelate? I think it was just talked about at the International Osteo Conference this past June, but I don't think it is available in the US yet. Also, once you have been on Forteo, can you move on to that or would it be considered the same kind of drug?
I have been on Forteo for 15 months and am also wondering what I will do after the 2 years. I have never been on any bisphosphonates, just went right on Forteo after I was diagnosed with severe osteo. Before I make a decision I want to know and research ALL my options. Since my osteo was caused by a calcium absorption problem, I wonder if my being on a diuretic along with calcium, vitamin d, and exercise would be enough after the Forteo. I would like to know more about the Aredia option and also what is the difference in the afterlife of Fosomax and Actonel? I assumed since they are both the same kind of drug that it would be the same. Is the difference due to the way it is taken or just that Actonel hasn't been out and studied for as long as Fosomax? Has anyone heard any recent information about strontium ranelate? I think it was just talked about at the International Osteo Conference this past June, but I don't think it is available in the US yet. Also, once you have been on Forteo, can you move on to that or would it be considered the same kind of drug?
DesertBloom
09-11-2006, 08:46 PM
I am new to this health board and thought it would be good to jump in here.
I have been on Forteo for 15 months and am also wondering what I will do after the 2 years. I have never been on any bisphosphonates, just went right on Forteo after I was diagnosed with severe osteo. Before I make a decision I want to know and research ALL my options. Since my osteo was caused by a calcium absorption problem, I wonder if my being on a diuretic along with calcium, vitamin d, and exercise would be enough after the Forteo. I would like to know more about the Aredia option and also what is the difference in the afterlife of Fosomax and Actonel? I assumed since they are both the same kind of drug that it would be the same. Is the difference due to the way it is taken or just that Actonel hasn't been out and studied for as long as Fosomax? Has anyone heard any recent information about strontium ranelate? I think it was just talked about at the International Osteo Conference this past June, but I don't think it is available in the US yet. Also, once you have been on Forteo, can you move on to that or would it be considered the same kind of drug?
Hi: From what I've read (as of 6-06) Strontium Ranelate is not available in the U.S. yet. It is similar to the Bisphosphonate category. If you Google it you'll find articles on it, and see if it helps any. Strontium Ranelate, is not the same as Forteo which is PTH (para thyroid hormone).
Your best bet is to read as much as you can and discuss the options with your dr to see what you can switch to after forteo. I'm still in the process of figuring out what the differences are in meds myself, hopefully someone with more info will jump in...Sorry :dizzy:
I have been on Forteo for 15 months and am also wondering what I will do after the 2 years. I have never been on any bisphosphonates, just went right on Forteo after I was diagnosed with severe osteo. Before I make a decision I want to know and research ALL my options. Since my osteo was caused by a calcium absorption problem, I wonder if my being on a diuretic along with calcium, vitamin d, and exercise would be enough after the Forteo. I would like to know more about the Aredia option and also what is the difference in the afterlife of Fosomax and Actonel? I assumed since they are both the same kind of drug that it would be the same. Is the difference due to the way it is taken or just that Actonel hasn't been out and studied for as long as Fosomax? Has anyone heard any recent information about strontium ranelate? I think it was just talked about at the International Osteo Conference this past June, but I don't think it is available in the US yet. Also, once you have been on Forteo, can you move on to that or would it be considered the same kind of drug?
Hi: From what I've read (as of 6-06) Strontium Ranelate is not available in the U.S. yet. It is similar to the Bisphosphonate category. If you Google it you'll find articles on it, and see if it helps any. Strontium Ranelate, is not the same as Forteo which is PTH (para thyroid hormone).
Your best bet is to read as much as you can and discuss the options with your dr to see what you can switch to after forteo. I'm still in the process of figuring out what the differences are in meds myself, hopefully someone with more info will jump in...Sorry :dizzy:
taape
09-11-2006, 11:01 PM
I was hoping the PTH nasal spray would be FDA approved, I think it's in Stage 3 Clinical Trials. What is Aredia, I haven't heard of that before.
DesertBloom
09-12-2006, 12:24 AM
Hi Taape: hPTH (PTH nasal spray) won't be available unitl 2008, when forteo reaches it's patent protection limit.
As far as Aredia goes, Google the word "Pamidronate" to get further info. I would like to post a URL, but it may not be allowed to be posted, and possibly deleted by the Moder. As I mentioned before, Pamidronate is used for other med problems as well as osteo...and is an iv infused drug.
Best of Wishes...
Pam
As far as Aredia goes, Google the word "Pamidronate" to get further info. I would like to post a URL, but it may not be allowed to be posted, and possibly deleted by the Moder. As I mentioned before, Pamidronate is used for other med problems as well as osteo...and is an iv infused drug.
Best of Wishes...
Pam
taape
09-12-2006, 01:58 AM
Thanks DesertBloom ---2008!!! What am I going to do until then? This isn't good news.
newbones
09-15-2006, 11:42 AM
taape,
I just read an article about a study being done on a new osteoporosis drug called Denosumab. It has been in Phase III clinical trials since 2005 (perhaps you are aware of it; if not, I'm sure you could do a search and find out more about it). Anyway, it is administered by injection either every three months or every six months and is supposed to be more effective than the biophosphonates and also result in increased BMD. The article didn't say when it might be approved and available.
Also read an article stating that the herb sage helps to slow bone resorption.
I just read an article about a study being done on a new osteoporosis drug called Denosumab. It has been in Phase III clinical trials since 2005 (perhaps you are aware of it; if not, I'm sure you could do a search and find out more about it). Anyway, it is administered by injection either every three months or every six months and is supposed to be more effective than the biophosphonates and also result in increased BMD. The article didn't say when it might be approved and available.
Also read an article stating that the herb sage helps to slow bone resorption.
DesertBloom
09-15-2006, 08:12 PM
taape,
I just read an article about a study being done on a new osteoporosis drug called Denosumab. It has been in Phase III clinical trials since 2005 (perhaps you are aware of it; if not, I'm sure you could do a search and find out more about it). Anyway, it is administered by injection either every three months or every six months and is supposed to be more effective than the biophosphonates and also result in increased BMD. The article didn't say when it might be approved and available.
Also read an article stating that the herb sage helps to slow bone resorption.
Hi: I've done some reading on this drug, but can't figure out if there is any promising news on whether or not the FDA will approve it; I guess that would be impossible to know anyway. I know it takes about 8 years to get to the FDA approval process, so if you read/hear anything about denosumab please let us know.
I've been watching Amgen's web site (company testing it) and haven't read anything yet that would lead me to believe that an actual FDA approval application has been filed yet. I also get notifications from Center Watch's-Patient Notification Service, on newly approved meds, which also gives some updates on drug testing currently in progress, but haven't heard anything from Amgen yet, except that some other drugs they were testing have rec'd FDA approval.
I just read an article about a study being done on a new osteoporosis drug called Denosumab. It has been in Phase III clinical trials since 2005 (perhaps you are aware of it; if not, I'm sure you could do a search and find out more about it). Anyway, it is administered by injection either every three months or every six months and is supposed to be more effective than the biophosphonates and also result in increased BMD. The article didn't say when it might be approved and available.
Also read an article stating that the herb sage helps to slow bone resorption.
Hi: I've done some reading on this drug, but can't figure out if there is any promising news on whether or not the FDA will approve it; I guess that would be impossible to know anyway. I know it takes about 8 years to get to the FDA approval process, so if you read/hear anything about denosumab please let us know.
I've been watching Amgen's web site (company testing it) and haven't read anything yet that would lead me to believe that an actual FDA approval application has been filed yet. I also get notifications from Center Watch's-Patient Notification Service, on newly approved meds, which also gives some updates on drug testing currently in progress, but haven't heard anything from Amgen yet, except that some other drugs they were testing have rec'd FDA approval.
dixiepeep
09-19-2006, 09:56 AM
I have been on Forteo for 18 months. I have to call the doctor today to see if he wants me to continue the treatment. I have not had any problems injecting it. I hope it is working!!! I was so happy to see the posts here. I also wonder what happens after treatment.
taape
09-19-2006, 11:27 PM
I'm getting a second opinion next week regarding continuing Forteo or what treatments are available and appropriate. I've pretty much decided that I'm not going to take bisphosphonates, it's just too dangerous given my stomach problems and my chronic disc pain, no fractures. I'll let everyone know if the doctor has any great ideas.
DesertBloom
09-21-2006, 05:58 PM
I'm getting a second opinion next week regarding continuing Forteo or what treatments are available and appropriate. I've pretty much decided that I'm not going to take bisphosphonates, it's just too dangerous given my stomach problems and my chronic disc pain, no fractures. I'll let everyone know if the doctor has any great ideas.
Taape: Good luck with your appt. I hope the doc has a good alternative to forteo, or lets you stay on it. I know how you feel about the bisphosphonates, but the people that are on the IV versions, say they don't have the stomach problems, because the med bypasses that by going through your veins. I don't know if this would be the case with everyone, but so far the people I've talked to on it say they don't get the stomach probs. Also, I haven't heard as many complaints about the bone pain in the IV versions either (pamidronate, etc). Whatever the doc decides, make sure you agree with it...
Let us know how you make out :angel:
Pam
Taape: Good luck with your appt. I hope the doc has a good alternative to forteo, or lets you stay on it. I know how you feel about the bisphosphonates, but the people that are on the IV versions, say they don't have the stomach problems, because the med bypasses that by going through your veins. I don't know if this would be the case with everyone, but so far the people I've talked to on it say they don't get the stomach probs. Also, I haven't heard as many complaints about the bone pain in the IV versions either (pamidronate, etc). Whatever the doc decides, make sure you agree with it...
Let us know how you make out :angel:
Pam
stonesc
10-10-2006, 10:13 PM
First of all, 2 years is the max you can take Forteo. And yes, you have to get on a biophosonate to maintain the bone you've added with Forteo. I finished Forteo in July and am now on Actonel.
DesertBloom
10-11-2006, 01:04 AM
Hi stonesc: Forteo "can" be extended beyond the 2 years if you have severe conditions that totally prevents you from taking oral bisphosphonates or calcitonin. I know several people who have done this, but they had very unusual circumstances with many different complications with meds to deal with. All of these people didn't go way beyond the 2 years, and the most I've heard of was not more than 2 1/2 years.
I would imagine, that you would have to get this approved with the insurance co. and who knows if all insurances would agree to it. But it can be done... I'm just not sure how they do it.
When I finish my 2 yrs. I was told I would probably go back on Actonel, but the side effects I went through with it, doesn't make this a good approach in my opinion. I'm hoping by the time my Forteo is up, there will be other options available that aren't as yet approved (reclast) is just one idea, but it isn't even approved yet and who knows if it will be, you never know what the FDA will finally do with a drug. I like the idea of a once a year injection, over 15 minutes as opposed to a couple of hours (time of infusion for others) now available and these are done every 3 months or more.
Anyway, all of this is "conjecture" at this point since there is no gaurantee it will even be approved; it's still in phase III trials, it has been approved for other bone disorders, but not Osteo yet. If it is approved they have a projected date of 2007 but who knows...
We'll have to wait and see what happens.
Pam
P.S. I just wanted to add, that I believed that Forteo could only be used for 2 yrs. because that's what all the literature say's, but it wasn't until I meet some that did this that I had to revise what I thought was accurate.
I would imagine, that you would have to get this approved with the insurance co. and who knows if all insurances would agree to it. But it can be done... I'm just not sure how they do it.
When I finish my 2 yrs. I was told I would probably go back on Actonel, but the side effects I went through with it, doesn't make this a good approach in my opinion. I'm hoping by the time my Forteo is up, there will be other options available that aren't as yet approved (reclast) is just one idea, but it isn't even approved yet and who knows if it will be, you never know what the FDA will finally do with a drug. I like the idea of a once a year injection, over 15 minutes as opposed to a couple of hours (time of infusion for others) now available and these are done every 3 months or more.
Anyway, all of this is "conjecture" at this point since there is no gaurantee it will even be approved; it's still in phase III trials, it has been approved for other bone disorders, but not Osteo yet. If it is approved they have a projected date of 2007 but who knows...
We'll have to wait and see what happens.
Pam
P.S. I just wanted to add, that I believed that Forteo could only be used for 2 yrs. because that's what all the literature say's, but it wasn't until I meet some that did this that I had to revise what I thought was accurate.
taape
10-11-2006, 11:34 PM
I was put on Forteo not only because my bone density was so low but because I couldn't tolerate any oral medications. Even with IV infusions of bisphosphonates it does effect the stomach some. I guess I could tolerate it once in a while but not on a regular basis for the rest of my life. I think I am an extreme case of not being able to tolerate the medications. We'll see what this doctor says.
DesertBloom
10-12-2006, 12:11 AM
I was put on Forteo not only because my bone density was so low but because I couldn't tolerate any oral medications. Even with IV infusions of bisphosphonates it does effect the stomach some. I guess I could tolerate it once in a while but not on a regular basis for the rest of my life. I think I am an extreme case of not being able to tolerate the medications. We'll see what this doctor says.
Hi Taape: I hope the doc will consider extending you Forteo due to your problems, but from what I've heard they won't do it for more than a few 3-6 months total. But check with them and see what they and the insurance co thinks. For some reason I don't think my insurance would go for it, unless it was medically necessary and I'm not even sure about that, since for now, bisphos's have never threatened my life-- their just a pain in the rear with the unbearable stabbing, out of the blue pain, facial rashes, and stomach probs. I had a couple of close calls when I had the pain hit unbelievably in my feet and was unable to put any weight on them. I was walking from the post office at the time, and I had to sit on the ground till it went away. Came real close to loosing my balance on a cement walkway which really startled me--lucky I have real good balance and real "fast" reactions.
Hi Taape: I hope the doc will consider extending you Forteo due to your problems, but from what I've heard they won't do it for more than a few 3-6 months total. But check with them and see what they and the insurance co thinks. For some reason I don't think my insurance would go for it, unless it was medically necessary and I'm not even sure about that, since for now, bisphos's have never threatened my life-- their just a pain in the rear with the unbearable stabbing, out of the blue pain, facial rashes, and stomach probs. I had a couple of close calls when I had the pain hit unbelievably in my feet and was unable to put any weight on them. I was walking from the post office at the time, and I had to sit on the ground till it went away. Came real close to loosing my balance on a cement walkway which really startled me--lucky I have real good balance and real "fast" reactions.
taape
10-12-2006, 03:44 AM
That's very scary, who wants to fall especially with low bone density. Glad you caught yourself. An extension for 3-6 months would help and give me more time for researching options. I don't want permanent stomach problems.