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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.
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 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."
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.





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