I've been treated for osteoporosis for two years and just had a second DEXA scan to see how I was doing. Unfortunately, I'm worse even though I've been faithful to my treatment and calcium intake. My internist wants me to start Reclast but I want to know why I'm not building bone and I'm too afraid to wait ANOTHER 2 years for my next bone scan to see if I've improved. I'm taking 2400 mg of calcium a day plus Vitamin D and my weekly Fosamax pill. It seems to me that I need to be referred to someone who is an expert to find out why I keep losing bone even with treatment and major amounts of calcium and vitamin D. What could be the reason I'm not building bone? BTW, I'm a white 58 year old/surgical menopause at 35.
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Q: Osteoporosis worse even after treatment
Answers (5)
11/25/08 5:33pm
Hi Pixy: I'm sorry you aren't improving on your osteoporosis treatment. Will your insurance allow a second opinion? I don't know what tests you've had, but maybe there is some other contributing factor that is causing bone loss.
If your insurance will allow a second opinion, from a specialist, they most likely would check things like thyroid, parathyroid, and calcium absorption. There are secondary causes of osteo as well, that are treatable, but you would have to be tested for them.
If you decide to take Reclast, there is a test that can be done as a baseline (before treatment) and then again in several months, after the infusion, to see if it's working.
Here are two articles on the tests I'm referring to from Dr. Gonter and one I wrote on the same topic which is bone marker testing. This test is really simple to do, and it will give the Dr information about how the drug your taking is working. This test won't give you a t-score and it's not a substitute for a dxa, but it will provide information that is crucial at the early stage of treatment on any drug. This test may also shed some light on why you aren't improving as fast as you would like to.
This test is done in addition to a dxa, and is either a blood or urine test of your bone markers. Within the article listed above, look at the names of the different testing that can be done and ask if this is something the Dr might want to do if you decide to take the Reclast infusion, or even if you don't have the infusion.
Having to wait for 2 years to find out if your treatment is working is very difficult, and something I didn't want to do since I was taking a very expensive drug. I have a "24 hour urine NTx (n-telopeptide)" several times a year, so the Dr will know--in between dxa's--if the treatment is working or not. The test I have is only one of many that can be done to check bone markers so read the list of the different names.
Read the links and see if your Dr will order the test, and you might want to look into seeing someone who could test for secondary causes and hopefully give you an answer to your question.
Good luck in your search.
12/22/11 11:34pm
You don't mention how much vitamin D you are taking, or if you've gotten a vitamin D blood test. You absolutely need a 25-hydroxyvitamin D test (paid for by medical insurance like any other blood test with the DX of osteoporosis that you have). Although 32 ng. is the lowest level considered "normal" the ran goes much higher, and for someone with osteoporosis many people are treated to attain a level of 50 ng. or so. There are many cases of osteopenia or osteoporosis improving with vitamin D alone.
12/22/11 11:35pm
You don't mention how much vitamin D you are taking, or if you've gotten a vitamin D blood test. You absolutely need a 25-hydroxyvitamin D test (paid for by medical insurance like any other blood test with the DX of osteoporosis that you have). Although 32 ng. is the lowest level considered "normal" the ran goes much higher, and for someone with osteoporosis many people are treated to attain a level of 50 ng. or so. There are many cases of osteopenia or osteoporosis improving with vitamin D alone.
12/22/11 11:35pm
You don't mention how much vitamin D you are taking, or if you've gotten a vitamin D blood test. You absolutely need a 25-hydroxyvitamin D test (paid for by medical insurance like any other blood test with the DX of osteoporosis that you have). Although 32 ng. is the lowest level considered "normal" the ran goes much higher, and for someone with osteoporosis many people are treated to attain a level of 50 ng. or so. There are many cases of osteopenia or osteoporosis improving with vitamin D alone.
12/22/11 11:35pm
You don't mention how much vitamin D you are taking, or if you've gotten a vitamin D blood test. You absolutely need a 25-hydroxyvitamin D test (paid for by medical insurance like any other blood test with the DX of osteoporosis that you have). Although 32 ng. is the lowest level considered "normal" the ran goes much higher, and for someone with osteoporosis many people are treated to attain a level of 50 ng. or so. There are many cases of osteopenia or osteoporosis improving with vitamin D alone.
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Obviously I didn't mean to click this 3 times, it didn't seem to be taking.