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Osteoporosis Message Board

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I know EXACTLY how you feel, but try to look at no change as holding steady and therefore no loss, which is considered to be a gain. I went through some down days, and I let those feelings flow over me, and then I moved on to be grateful for where I am and what I have in my life. If you don't mind, could you share your Vitamin D facts. I have had trouble with vitamin d absorption and I am thinking that it could have had an effect on how the forteo worked. I guess I'll never really know, so what I need to do now is concentrate on getting it up and keeping it up. What are you doing to get yours up? Do you think I need to get it under control before I start the next treatment? It has been 3 weeks since my last shot and I know the sand is running out of the hourglass for me in terms of having to make a decision. I am totally avoiding starting a bisphosphonate-I don't know why. Many friends of mine are doing just fine on various meds, so it's not like I have been hearing negative stories from them. I appreciate your sharing.
Trail-I am glad of the .3 left hip and .4 right hip increase. While my spine stayed the same my xrays show I have several hemangiomas (clusters of blood vessels)at the L1-4 level. A specialist told me the hemangiomas could make my dexas look worse. As forteo is supposed to have more of an effect on spine than hips , I don't know why I would have the reverse result so I wonder about the hemangiomas skewing my results.
Anyway, the way I look at it now is that the last 12 months is behind me and I am going to focus on goals for the next 6 months.

I'll just go over my exp. with the vit d. First, when my dose was increased it did not show up in the vit d blood test as an improvement for some time. My endo at the time told me it could take several months to show up on the blood test. Another doc with more of a vit d background said with a high dose 50,000 a week - you should see quite a bit of gain by 6 wks. So be aware of this lag thing.

Second, I think my vit d was low for several reasons at a few points on the forteo. My first doc dosed too low at 800 then said go to 1200-this was inadequate esp. in the middle of winter at my very northern latitude .

Third, forteo eats up vit d. The package insert states "The median serum 25 hydroxyvitamin D concentration at 12 months was decreased by 19% in women and 10% in men compared with baseline." No doc mentioned this to me. While I read the insert when I started forteo, this didn't register .When looking at your situation don't discount the forteo effect.

Fourth, is vit d test reliability. I actually called a vit d national expert at one point when I was so frustrated . He said the test has an unreliability factor. It seems you have to test, and re-test till you have a feel for what is going on and the maintenance dose right for you.

Fifth, I had to look at the type and quality of the vit d I was taking. At first I took a formula that had vit d 2 in it. Apparently d2 is inferior. The high doses the docs prescribe is vit d2 .Also I was told that d2 will fall quicker than d3. .Also, I really wonder if some of the d3 I took was effective. I tried to find the best high dose d possible. What I found was Maximumd3 from pro-pharma in mo. I have only recently started this vit d so I don't have a track record with it .You can research the product by searching MaximumD3. Look out though , there is a look alike site . This dose is 10,000IU. That is the only dose it is made in. Now I am taking a pill every other day . But only blood tests will show how this d3 works out.

Sixth, there seems to be quite a difference of opinion about where your d level should be. One doc told me 30 is adequate. At this point , I think the best info I have obtained would be something like 50-70. With monitoring required .If others have info on optimum level , please share.

And, I should add that not only was I intent on getting the D level right to support the forteo project but there are other benefits I was hoping for .Research shows a decrease in falls when vit d is adequate. I noticed when my vit d improved , I no longer had pains in my legs at night- this is complicated because at the same time I worked on an iron deficiency. And, there does seem to be alot of news about vit d possibly playing a role in preventing cancers. Also, a vit d deficiency may play a role in autoimmune diseases , as I have Hashimoto's , I wanted to up the d for this aspect as well.
You said you have not started your fosamax yet and it is several weeks since you stopped forteo. If your d is presently low but you are increasing your dose , because of the lag in the improvement showing up on your blood test, you may end up delaying the fosamax start beyond the month .

Good luck with your vit d project. I think the vitamin d council site is a good place for info on dosing , levels , and related research.
I am starting my bisphosphonates next week. When I asked my doctor how long I could take a drug holiday after finishing forteo, he said about a month. So, Tuesday it will be exactly 4 weeks. It's interesting to hear all the differnt opinions of the different docs, mine said he thought fosamax was better that actonel, and he also said I could take the 35mg dose instead of the 70mg. I didn't ask him how long he wanted me to be on it, but I guess some of that could depend on my test results. I am nervous, but we are taking a trip to New York and I will have to take it while I am gone, so I will be distracted and that should help me not focus on it so much.

My latest vitamin d test came back and I have jumped up 10 points since being off the forteo and hopefully it will continue to rise.

There is a great new review article in The New England Journal of Medicine August 30,2007 all about the latest anabolic therapies coming up on the horizon plus a bunch of good information about forteo too.

Keep in touch Spinewhine and Osteoblast and let us all know your progress and what you decide to do next.


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