naturalman
04-27-2007, 03:51 PM
I was orginally on Fosamax for 2 years, then Actonel for 3 years. For 4 months after that, I was using HGH injections, and then for the last 7 months I've been on Forteo. With the bisphosphonates, I went from a -5.2 in my spine to a -4.3 (over 5 years). I had some blood tests last week and it showed my NTX as 128, which is 78 over the top range, meaning I was losing a lot of bone. My bone-specific ALK showed I was forming bone at 26, about 6 over the top range. My Vit. D went from 60 in the last 7 months to 26, which is below the range. I have alot of pain in my back, and have lost the ability to do exercises. My endo has said to stop taking the forteo and has put me back on Fosamax+D, plus Miacalcin. I had a DEXA scan yesterday, and it showed that my spine t-score went from -4.3 to -4.8 and hips from -2.7 to -3.0. It appeared to be too risky to continue with the forteo. I've read many of the comments on the healthboards that readings the first year may not be that good, but I didn't expect for me to lose that much bone in 7 months, and the risk of fracture increasing. Has anyone else out there have a similar experience with Forteo? At this point it seems the only thing to do since I can't afford to lose anymore while waiting for Forteo to kick in with gains.
Rob
Rob
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osteoblast
04-27-2007, 05:58 PM
Naturalman-Same dexa machine or not? As we are discussing on another thread dexa results on different machines can vary . This is accepted by the professionals as real and not just our conjecture.
Also your vitamin d is pretty low now -so is mine. I am on forteo ,calcium and vit d supplements. I take 2000 d a day. If all you are getting is the d in fosamax d you should probably talk to your dr. whether more d is called for to pull the d up. Some drs. do megadoses of d 50,000 2x a week for several weeks to increase the d stored in your body. Of course, there can be other things going on with your body where the dr. thinks more d is not called for or dangerous. I am being checked for celiac disease which might explain several things incl. low d and iron-because celiac disease causes poor absorption in the small intestines. So my dr. doesn't want to megadose d until we find out if the problem is malabsorption.
Have the drs ruled out various causes of osteo in your situation?
Also your vitamin d is pretty low now -so is mine. I am on forteo ,calcium and vit d supplements. I take 2000 d a day. If all you are getting is the d in fosamax d you should probably talk to your dr. whether more d is called for to pull the d up. Some drs. do megadoses of d 50,000 2x a week for several weeks to increase the d stored in your body. Of course, there can be other things going on with your body where the dr. thinks more d is not called for or dangerous. I am being checked for celiac disease which might explain several things incl. low d and iron-because celiac disease causes poor absorption in the small intestines. So my dr. doesn't want to megadose d until we find out if the problem is malabsorption.
Have the drs ruled out various causes of osteo in your situation?
DesertBloom
04-27-2007, 08:14 PM
Hi Naturalman: I hope your Dr figures out what's going on, and I would agree that if the differing scores are from different machines that might explain some of it.
I'm confused about something you said, and that is the comment on the NTx test. If you're taking forteo when you do that test, you want to see an increase in your score, and with bisphosphonates you want to see a decrease. Below is an article on this. To read this article you have to register, but it's free.
http://doctor.medscape.com/viewarticle/463099
Good luck, and I hope you get this figured out.
I'm confused about something you said, and that is the comment on the NTx test. If you're taking forteo when you do that test, you want to see an increase in your score, and with bisphosphonates you want to see a decrease. Below is an article on this. To read this article you have to register, but it's free.
http://doctor.medscape.com/viewarticle/463099
Good luck, and I hope you get this figured out.
naturalman
05-01-2007, 09:15 AM
Osteoblast,
Yes, it was the same DEXA machine that I've been tested on since I was diagnosed. My Vitamin D levels had always been high until after I started using forteo; I take 2,000 iu a day. My dr. could not find the reason for my osteoporosis, and has indicated it's idiopathic, no known cause. I had all the blood tests to see if I had celiac, and they all came back negative. The dr. wanted to do a scope of my small intestines to make sure, but I didn't want that test for risk of scarring to the throat, I think the blood tests are sufficient. Thanks for your response. Rob
Yes, it was the same DEXA machine that I've been tested on since I was diagnosed. My Vitamin D levels had always been high until after I started using forteo; I take 2,000 iu a day. My dr. could not find the reason for my osteoporosis, and has indicated it's idiopathic, no known cause. I had all the blood tests to see if I had celiac, and they all came back negative. The dr. wanted to do a scope of my small intestines to make sure, but I didn't want that test for risk of scarring to the throat, I think the blood tests are sufficient. Thanks for your response. Rob
naturalman
05-01-2007, 09:23 AM
DesertBloom,
Yes, you are correct in that when you are on forteo, the NTx should increase, but the question is, how much increase. The medical journals say about 58% from base, but mine was closer to 150%. My bone formation results weren't nearly as high as resorption, thus given me a negative result, which at my level of osteoporosis I can't afford to lose more and risk a fracture. I will be taking Fosamax for 3 months to get the resorption to more controllable numbers, and then decide if I should go back on forteo. Thanks for your response. Rob
Yes, you are correct in that when you are on forteo, the NTx should increase, but the question is, how much increase. The medical journals say about 58% from base, but mine was closer to 150%. My bone formation results weren't nearly as high as resorption, thus given me a negative result, which at my level of osteoporosis I can't afford to lose more and risk a fracture. I will be taking Fosamax for 3 months to get the resorption to more controllable numbers, and then decide if I should go back on forteo. Thanks for your response. Rob