spinewhine
04-30-2007, 08:04 PM
Well, I finally had my doctor's visit following the course of treatment with Forteo. He was very pleased with my 22% increase in bone density in my spine. Got very little increase in my hip. He said the hip was different type of bone so it was harder to get improvement there. Of course, I'm still in the bottom one-third of my age group for bone density in the spine, so I can't rest on my laurels.
Taape, you'll be interested to know he offered me another course of treatment with Forteo. I said I didn't know one could have another course, but apparently more studies have been done and so far, no osteosarcomas. I told him that I'd been nervous about the osteosarcoma and was sort of glad to be finished with Forteo. He told me I should continue to get get gains with the Actonel as the "young" bone that was developed with the Forteo mineralizes. I asked if I could try Actonel for a year or two and then go back to Forteo if I found my bone density was decreasing and he said I could. So I have that route in reserve. He told me to have another bone density test one year after the last one, and we'd see how I was doing.
I mentioned reading about the one case of osteosarcoma on Lilly's website. He told me the woman was very ill, no autopsy was done and the family would not release her medical records, so it was suspected that she had it before going on Forteo.
He prefers Actonel over the other bisphosphonates. Said it clears the system faster, or something like that. (I wish I'd had a little tape recorder going so I could better report back.) He told me Actonel is working on a monthly dose drug like Boniva now has.
He also urged me to continue the twice-monthly vitamin D supplement that he had given me and the calcium.
I asked about the standing on one foot, but he didn't think much of it. I also asked about the vibrating platforms. He thought more of those. Said one of his patients had one but said the guy wouldn't exercise, would only stand on the platform, and hadn't gotten gains. He said that if one squats on the platform that was the more strongly vibrating of the two popular models (sorry, I forget the names), it seems to do good, engaging many muscles, but that just standing still wouldn't do anything. There's a more gently vibrating model that's designed for just standing, but he didn't know much about it.
I think I will do without it, especially since these things cost between $2500 and $5000!
Well, maybe more will come to me later. That's about all I remember for now.
Taape, you'll be interested to know he offered me another course of treatment with Forteo. I said I didn't know one could have another course, but apparently more studies have been done and so far, no osteosarcomas. I told him that I'd been nervous about the osteosarcoma and was sort of glad to be finished with Forteo. He told me I should continue to get get gains with the Actonel as the "young" bone that was developed with the Forteo mineralizes. I asked if I could try Actonel for a year or two and then go back to Forteo if I found my bone density was decreasing and he said I could. So I have that route in reserve. He told me to have another bone density test one year after the last one, and we'd see how I was doing.
I mentioned reading about the one case of osteosarcoma on Lilly's website. He told me the woman was very ill, no autopsy was done and the family would not release her medical records, so it was suspected that she had it before going on Forteo.
He prefers Actonel over the other bisphosphonates. Said it clears the system faster, or something like that. (I wish I'd had a little tape recorder going so I could better report back.) He told me Actonel is working on a monthly dose drug like Boniva now has.
He also urged me to continue the twice-monthly vitamin D supplement that he had given me and the calcium.
I asked about the standing on one foot, but he didn't think much of it. I also asked about the vibrating platforms. He thought more of those. Said one of his patients had one but said the guy wouldn't exercise, would only stand on the platform, and hadn't gotten gains. He said that if one squats on the platform that was the more strongly vibrating of the two popular models (sorry, I forget the names), it seems to do good, engaging many muscles, but that just standing still wouldn't do anything. There's a more gently vibrating model that's designed for just standing, but he didn't know much about it.
I think I will do without it, especially since these things cost between $2500 and $5000!
Well, maybe more will come to me later. That's about all I remember for now.
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Rosegarden
04-30-2007, 08:17 PM
Very interesting report, Spinewhite. Congratulations on your success with Forteo. That's just wonderful. It's really a quandry to know what to do next, isn't it?
Thanks for sharing. It gives us new people hope.
Thanks for sharing. It gives us new people hope.
taape
04-30-2007, 09:13 PM
Congratulations on your increse in bone density. Thanks for the information about continued Forteo use in some cases. I think I'll contact my doctor one more time if she isn't willing then I may need to change doctors.
osteoblast
04-30-2007, 09:34 PM
Spinewhine: Congratulations again-I remember you posted your results following your dexa. Your results give those of us on forteo hope that maybe, just maybe ,we will have good results too. You must be very glad that you could be on forteo.
I am really amazed that the dr. offered an extended course of treatment. It was two years you just completed wasn't it? How much longer did he say was possible? I do understand your desire to be done with forteo though.
You said that your dr. advised you to continue with calcium and vitamin d 2x monthly. What is your vitamin d regimen is it 50,000 2x a month plus an amount daily. I am way low on d, and iron- for now the dr. just wants me to do d2,000 a day and iron at 47.5 a day until I get an endoscopy for celiac disease. I tested positive on one of the four blood tests for celiac.After the endoscopy she will decide to megadose or not on the d.
I am wondering if my low d ( it went from 36, to 28 to 19 from August to Feb on an 800 dose) is going to reduce my forteo results. So with your incredible results I am wondering what your d level was when your dr. decided to megadose( I am assuming your 2x a month was a megadose.) And , at that time did you just do the high dose and no daily dose?
Also prior to your forteo had you ever taken bisphosphonates- if it's ok to ask could you let us know for how long and on what? I have read if a person is
"treatment naive" i.e. no prior bisphosphonates before forteo , that their results are better than those previously treated.
Thanks again for sharing your results, it really is encouraging. Also , good luck with the Actonel!
I am really amazed that the dr. offered an extended course of treatment. It was two years you just completed wasn't it? How much longer did he say was possible? I do understand your desire to be done with forteo though.
You said that your dr. advised you to continue with calcium and vitamin d 2x monthly. What is your vitamin d regimen is it 50,000 2x a month plus an amount daily. I am way low on d, and iron- for now the dr. just wants me to do d2,000 a day and iron at 47.5 a day until I get an endoscopy for celiac disease. I tested positive on one of the four blood tests for celiac.After the endoscopy she will decide to megadose or not on the d.
I am wondering if my low d ( it went from 36, to 28 to 19 from August to Feb on an 800 dose) is going to reduce my forteo results. So with your incredible results I am wondering what your d level was when your dr. decided to megadose( I am assuming your 2x a month was a megadose.) And , at that time did you just do the high dose and no daily dose?
Also prior to your forteo had you ever taken bisphosphonates- if it's ok to ask could you let us know for how long and on what? I have read if a person is
"treatment naive" i.e. no prior bisphosphonates before forteo , that their results are better than those previously treated.
Thanks again for sharing your results, it really is encouraging. Also , good luck with the Actonel!
newbones
05-01-2007, 12:50 PM
Spinewhine,
Congratulations on your good results! I have also just received the results of my Dexa after completing the two years on Forteo. When I started on Forteo my T-scores were -3.3 (spine) and -1.0 (hip), the next Dexa they were -3.0 (spine) and -0.7 (hip), and now they are -2.6 (spine) and -0.9 (hip), which is a significant change in the spine almost out of osteoporosis range. I have decided that I would go back on Actonel as my doctor suggested as I don't want to take a chance in losing the gains I have made.
It is encouraging to know that Forteo may be an option in the future if my BMD decreases, but I, too, am relieved to be finished with it.
Congratulations on your good results! I have also just received the results of my Dexa after completing the two years on Forteo. When I started on Forteo my T-scores were -3.3 (spine) and -1.0 (hip), the next Dexa they were -3.0 (spine) and -0.7 (hip), and now they are -2.6 (spine) and -0.9 (hip), which is a significant change in the spine almost out of osteoporosis range. I have decided that I would go back on Actonel as my doctor suggested as I don't want to take a chance in losing the gains I have made.
It is encouraging to know that Forteo may be an option in the future if my BMD decreases, but I, too, am relieved to be finished with it.
DesertBloom
05-01-2007, 02:09 PM
Hi Spinewhine: That's fantastic news:blob_fire :blob_fire I didn't know about the option to continue forteo either, glad you mentioned it.
I didn't think that the patient with osteosarcoma would be an issue for us, since it was very possible the cancer was present prior to forteo. I've been keeping an eye out for any possible litigation and haven't heard anything yet.
They did do a biopsy, and found osteosarcoma, but no autopsy.
My Dr feels the same way about Actonel, but I still don't know what I'll do and I have another year to decide.
GREAT NEWS:wave:
I didn't think that the patient with osteosarcoma would be an issue for us, since it was very possible the cancer was present prior to forteo. I've been keeping an eye out for any possible litigation and haven't heard anything yet.
They did do a biopsy, and found osteosarcoma, but no autopsy.
My Dr feels the same way about Actonel, but I still don't know what I'll do and I have another year to decide.
GREAT NEWS:wave:
osteoblast
05-01-2007, 02:12 PM
Newbones-Congratulations on your great results as well. Your results are so encouraging to those of us still on forteo. I am on my 8th month, so quite some time to go. Your results and spinewhine's certainly support the research which showed best results on spine.
How soon after your last shot of forteo did you start your Actonel?
Did you have treatment with bisphosphonates before forteo, and if so would you let us know for how long?
Also did your dr. tell you why Actonel was the choice for you?
How soon after your last shot of forteo did you start your Actonel?
Did you have treatment with bisphosphonates before forteo, and if so would you let us know for how long?
Also did your dr. tell you why Actonel was the choice for you?
DesertBloom
05-01-2007, 02:20 PM
Hi Newbones: Congrats to you too!!! If you continue to see increases, like this, you could be well on your way to normal:blob_fire :blob_fire I hope the Actonel works for you and you have no trouble taking it.:wave:
taape
05-01-2007, 09:52 PM
Spinewhine,
Do you have any ideas about how I can find studies showing that patients are staying on Forteo longer than the two years? Did your doctor give you any journals where these are published? I'd sure like to have some documentation to talk with my doctor about since she is so adamant that nobody stays on Forteo longer than 2 years maximum and there's no option to do so.
Do you have any ideas about how I can find studies showing that patients are staying on Forteo longer than the two years? Did your doctor give you any journals where these are published? I'd sure like to have some documentation to talk with my doctor about since she is so adamant that nobody stays on Forteo longer than 2 years maximum and there's no option to do so.
osteoblast
05-01-2007, 11:59 PM
Taape-I have been wondering how one would find out about additional time past two years on forteo. It's not a problem for me for quite some time. But, I know you have an immediate interest in this issue from reading your posts. Do you think if you called Eli Lilly -Forteo the 800 number on the forteo box that perhaps they would be able to let you know whether the treatment period has been extended??Or , maybe they would take down your dr.'s number and call the dr? Something should be able to be worked out to find out if the period has been extended. Good luck, I hope this will work out for you if that is what you are looking for.
taape
05-02-2007, 12:05 AM
Osteoblast,
Thanks for the suggeston about calling Eli Lilly. I'll try that and see if they have some references to studies, etc., that they could either give me or provide directly to my doctor. So far the Forteo is the only thing that has worked for me. I dread trying IV infusions of bisphosphonates and the dramatic decrease in bmd following stopping the Forteo proves that it works for my problem.
Thanks for the suggeston about calling Eli Lilly. I'll try that and see if they have some references to studies, etc., that they could either give me or provide directly to my doctor. So far the Forteo is the only thing that has worked for me. I dread trying IV infusions of bisphosphonates and the dramatic decrease in bmd following stopping the Forteo proves that it works for my problem.
spinewhine
05-02-2007, 12:15 AM
I was not on any bisphosphonates before Forteo. I'm one of those people who had no idea that I had osteoporosis. Kind of funny -- I had friends who had the bone density test and came to work preening about how they had the bones of a twenty year old. I thought, "Hey, I should have that test too." I guess I just wanted to join the "good report card" group. It was certainly an unwelcome shock to hear that my spine T-score was -3.5 and that I was in the bottom one percent of spinal bone density for my age. My gynecologist freaked and sent me to an endocrinologist who he said was an expert in bone metabolism. My spine is now -2.1, in the osteopenia range. I must say my initial diagnosis scared the You Know What out of me, which was probably why I opted for the Forteo. I just had visions of crumbling on the spot, although I'd never broken a bone, had no bone pain and no idea that my bones were bad.
I'm not sorry about the Forteo. I'm grateful for the gains. But I was nervous about the osteosarcomas in the rats and although I was willing to do the Forteo, I didn't want to do more of it. I guess I'd like it to be around longer and see more tests before I continue it. I also have had, so far, no bad reaction to the Actonel, so I see no reason not to give it a try. If my bone density decreases badly this year, I'll regret not continuing Forteo, but I guess we just have to do the best we can to make decisions as we go along.
Taape, it wasn't clear why he said I could continue. I said that I had heard that two years was it, but he said that doctors were now offering additional two years and that more studies had been done. Unfortunately, he did not say where or how to find them. I agree with the recommendation that you call Lilly. Certainly, they must know if this is now being cleared for more than two years of use.
If I couldn't take the Actonel because of stomach problems, then I think I'd continue the Forteo, because I would be scared to lose my gains. Please let us know what you find out.
I dont know where you're from, but if you post your city, I guess I could fax the doctor and ask if he knows anyone offering the addtional course of treatment with Forteo in your area. Don't know if he'll respond, but I could try. See what Lilly has to say.
Somewhere during the course of treatment with Forteo (after about a year), one of my blood tests showed me to be vitamin D deficient and my doctor put me on 50,000 units of D, every two weeks. He told me to continue that. I am taking "Drisdol."
I'm not sorry about the Forteo. I'm grateful for the gains. But I was nervous about the osteosarcomas in the rats and although I was willing to do the Forteo, I didn't want to do more of it. I guess I'd like it to be around longer and see more tests before I continue it. I also have had, so far, no bad reaction to the Actonel, so I see no reason not to give it a try. If my bone density decreases badly this year, I'll regret not continuing Forteo, but I guess we just have to do the best we can to make decisions as we go along.
Taape, it wasn't clear why he said I could continue. I said that I had heard that two years was it, but he said that doctors were now offering additional two years and that more studies had been done. Unfortunately, he did not say where or how to find them. I agree with the recommendation that you call Lilly. Certainly, they must know if this is now being cleared for more than two years of use.
If I couldn't take the Actonel because of stomach problems, then I think I'd continue the Forteo, because I would be scared to lose my gains. Please let us know what you find out.
I dont know where you're from, but if you post your city, I guess I could fax the doctor and ask if he knows anyone offering the addtional course of treatment with Forteo in your area. Don't know if he'll respond, but I could try. See what Lilly has to say.
Somewhere during the course of treatment with Forteo (after about a year), one of my blood tests showed me to be vitamin D deficient and my doctor put me on 50,000 units of D, every two weeks. He told me to continue that. I am taking "Drisdol."
osteoblast
05-02-2007, 12:40 AM
Spinewhine Hi-Thanks for answering the questions regarding your treatment. Would you clarify the drisdol regimen? Are you taking one 50,000 drisdol each two weeks- so supplementing with 100,000 a month? Also are you taking a daily amount of vitamin d on top of that??
From what I have read the d is so important to bone building that I want to be sure to get what I need. And, I am d deficient now and probably have been for a few months at least. My d level was at 18- this is really poor. Do you know what your d level was at when the dr. started the drisdol?
I know exactly what you meant when you said you had the you know what scared out of you when you were diagnosed. Same here.
My dexa when I was diagnosed was-3.7 spine and -2.7 hip. I too had no idea and also felt like I was going to crumble. It took my breath away for months. Another dexa at a different hospital about 3 months later made me feel somewhat better-3.4 spine and-2.9 hip . Even though hip was worse in the second dexa at another clinic the spine being at -3.4 seemed to help my mind somewhat. I recently had another dexa at a third hospital with spine at -3.6 but hip at -2.5. Who knows? With each machine different it's impossible to know. Right now I think I just have to forget the numbers , do the forteo(17 months left), exercise, lift weights, try to eat right and make sure my lab tests are followed as they need to be. As I wrote before they are now checking me for celiac -so that may change the picture .
I am trying to develop a good mental attitude. Your sharing your story with us helps. Thanks again.
From what I have read the d is so important to bone building that I want to be sure to get what I need. And, I am d deficient now and probably have been for a few months at least. My d level was at 18- this is really poor. Do you know what your d level was at when the dr. started the drisdol?
I know exactly what you meant when you said you had the you know what scared out of you when you were diagnosed. Same here.
My dexa when I was diagnosed was-3.7 spine and -2.7 hip. I too had no idea and also felt like I was going to crumble. It took my breath away for months. Another dexa at a different hospital about 3 months later made me feel somewhat better-3.4 spine and-2.9 hip . Even though hip was worse in the second dexa at another clinic the spine being at -3.4 seemed to help my mind somewhat. I recently had another dexa at a third hospital with spine at -3.6 but hip at -2.5. Who knows? With each machine different it's impossible to know. Right now I think I just have to forget the numbers , do the forteo(17 months left), exercise, lift weights, try to eat right and make sure my lab tests are followed as they need to be. As I wrote before they are now checking me for celiac -so that may change the picture .
I am trying to develop a good mental attitude. Your sharing your story with us helps. Thanks again.
newbones
05-02-2007, 11:52 AM
I had been on Actonel for a year before starting on Forteo. My scores were still bad after a year on Actonel so my doctor thought a more aggressive treatment was called for. She may have given a reason in the beginning for selecting Actonel, but I don't remember now what it was. She suggested Fosamax after the Forteo, but I told her that if I had to take something I would prefer to go back to Actonel since I didn't have any problems with it before and it has a much shorter half-life than Fosamax.
I waited about three weeks after finishing the Forteo before starting back on Actonel because I wanted to find out the results of my Dexa before deciding what to do. However, I didn't want to wait too long before doing something since I don't want to lose the gains I've made with the Forteo. I don't like the idea that this might be long term though.
Like Spinewhine, I was in shock when I was first diagnosed; I had no pains, no fractures, had never had a broken bone in my life. I suddenly felt old and weak, but I've overcome that and I haven't let it slow me down.
Taape, I hope you can find something that will work for you. If it is possible to continue on Forteo that might be good for you. Keep us posted and good luck.
I waited about three weeks after finishing the Forteo before starting back on Actonel because I wanted to find out the results of my Dexa before deciding what to do. However, I didn't want to wait too long before doing something since I don't want to lose the gains I've made with the Forteo. I don't like the idea that this might be long term though.
Like Spinewhine, I was in shock when I was first diagnosed; I had no pains, no fractures, had never had a broken bone in my life. I suddenly felt old and weak, but I've overcome that and I haven't let it slow me down.
Taape, I hope you can find something that will work for you. If it is possible to continue on Forteo that might be good for you. Keep us posted and good luck.
CrohnieToo
05-07-2007, 02:28 AM
My two years on Forteo is up in August. My Endo has already suggested that if my results are as good this year's DEXA as last year's we might want to consider staying on Forteo.
Since I will NOT do the oral bisphosphonates .... I'm wondering what the status of Protelos is in the US?
Since I will NOT do the oral bisphosphonates .... I'm wondering what the status of Protelos is in the US?
trail
05-07-2007, 11:54 AM
Chronie too
What is Protelos? The only non-bisphophonate drug that I am aware of coming soon is Denosumab and I think it is an injection. I heard that it will be approved late this year(2007). Also, is your dr. saying that it is okay to stay on Forteo after the 2 years? There has been much discussion on this board and it seems that the docs are saying no right now. There are many of us finishing Forteo in the next 6 months or so and are trying to make some decisions about what to do next. I don't want to go the bisphosphonate route either.
Trail
What is Protelos? The only non-bisphophonate drug that I am aware of coming soon is Denosumab and I think it is an injection. I heard that it will be approved late this year(2007). Also, is your dr. saying that it is okay to stay on Forteo after the 2 years? There has been much discussion on this board and it seems that the docs are saying no right now. There are many of us finishing Forteo in the next 6 months or so and are trying to make some decisions about what to do next. I don't want to go the bisphosphonate route either.
Trail
spinewhine
05-07-2007, 10:07 PM
My two years on Forteo is up in August. My Endo has already suggested that if my results are as good this year's DEXA as last year's we might want to consider staying on Forteo.
Since I will NOT do the oral bisphosphonates .... I'm wondering what the status of Protelos is in the US?
Chronie, it's great to "hear your voice." I was wondering where you'd gone. Welcome back, and I'm so glad to hear that you're doing well on Forteo. Sorry, I know nothing about Protelos.
Since I will NOT do the oral bisphosphonates .... I'm wondering what the status of Protelos is in the US?
Chronie, it's great to "hear your voice." I was wondering where you'd gone. Welcome back, and I'm so glad to hear that you're doing well on Forteo. Sorry, I know nothing about Protelos.
DesertBloom
05-09-2007, 06:22 PM
Hi Trail: Sorry for jumping in here, but I noticed you didn't get an answer to your question, so I thought I would give it a shot.
Protelos is Strontium Ranelate which is not available in the US. I really don't know if it will be approved here, but another co, is working on Strontium Malonate, for release here. The only difference I can see so far between the two is Protelos is in a powder form and Strontium Malonate is a pill. I'm sure there are other differences, since one uses ranelate and the other malonate, but that's all I know.
At this point it's hard to say if SM will be approved by the FDA since it's in Stage II trials. In the US there is the OTC version of strontium (citrate), but you'll have to decide on this for yourself since I have no experience with it, there are others here taking the citrate, so maybe they could help you with that.
Good Luck...:wave:
Protelos is Strontium Ranelate which is not available in the US. I really don't know if it will be approved here, but another co, is working on Strontium Malonate, for release here. The only difference I can see so far between the two is Protelos is in a powder form and Strontium Malonate is a pill. I'm sure there are other differences, since one uses ranelate and the other malonate, but that's all I know.
At this point it's hard to say if SM will be approved by the FDA since it's in Stage II trials. In the US there is the OTC version of strontium (citrate), but you'll have to decide on this for yourself since I have no experience with it, there are others here taking the citrate, so maybe they could help you with that.
Good Luck...:wave: