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Old 04-30-2007, 05:04 PM   #1
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After Forteo doctor's visit

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.

 
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Old 04-30-2007, 05:17 PM   #2
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Re: After Forteo doctor's visit

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.

 
Old 04-30-2007, 06:13 PM   #3
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Re: After Forteo doctor's visit

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.

 
Old 04-30-2007, 06:34 PM   #4
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Re: After Forteo doctor's visit

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!

 
Old 05-01-2007, 09:50 AM   #5
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Re: After Forteo doctor's visit

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.

 
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