Almost two years ago, I got my first Dexa scan. Two weeks ago, I got my second, after being on Forteo for about 8 months.
Lumber Vertebrae: total bone density= 0.735 grams (70% of predicted young adult mean), and T score= -2.83. This is unchanged from prior study in 2005.
Left Hip: Total Bone density= 0.614 grams per square diameter, which is65% of the predicted young adult mean. The T score= -2.69. (It represents a 3.7% reduction in total BD when compared to prior study, which is not statistically significant, said the report).
Overall assessment: No significant change when compared to the prior study in 2005.
My doctor said to continue Forteo.
I got a little upset at the first part of the report that said I had rotatory scoliosis (which I knew) and significant spondylosis, which threw me, until I looked it up and found out it's spinal osteoarthritis, which I did know I had. LOL.
I would naturally like to have shown improvement, but I wasn't on any bone meds for several months (I couldn't take Actonel) until I went on Forteo, so all in all, it could be much worse. The Forteo doesn't bother me, but the pain from the arthritis does at times, although I seldom take any meds for it. If the Forteo strengthens my bones, though, I might be able to exercise more effectively for the arthritis, but of course that's a big if.
Blessings to all!
I know you feel discouraged, but the Forteo is a 2-year plan, so you should keep on with it. Hope for a better test result at the end of the 2-year period. I hope you can keep up some exercises, maybe swimming or an "easy does it" exercise class like we have at my YMCA.
Hi SheWolf: I agree with Rosegarden, you may just be around the corner from an increase with the forteo. As long as your score hasn't gotten worse, I think that is a plus! I've heard so many stories of people who scores were worse after the first 10 mos or so on a drug, so no decreases is really good. Who knows, but I suppose it could have gotten much worse if you weren't taking anything, and I bet that's how the dr is looking at it. Does he/she feel that your next score will be better?
Have you had any bone marker tests? I've heard stories where the bmd didn't increase on the dxa, but the NTx or BSAP numbers were increased on the 24 or 2 hour urine tests for n-telopeptide or Bone specific alkaline phosphotase. If you aren't familiar with these tests let me know and I'll fill you in as much as possible. If you haven't had a test for NTx or BSAP and there are others too, you might want the dr to order it to see if the forteo is working on that level.
Good luck, and I hope you can get some relief from the OA pain, I have that too so I know what you talking about. If you can do some exercises it should help with the pain. You just have to be careful with the exercises you choose so it doesn't increase the pain.
Hi Rosegarden & Desertbloom: Thanks for the encouragement. The only tests my doctor didn't do because she feels they're not very reliable are the urine tests. She didn't say why she feels that way, and since she ordered all the other ones I requested (from info received from you great folks on this forum), I didn't argue at that time. The calcium, Vitamin D, phosphorous, magnesium and others were all within normal ranges, except the calcium was slightly elevated. The phosphatase was 76 (range 32-92). My PTH intact was low, which she attributed to the Forteo. But I wonder about that. It should be 12-65, and mine showed a 4. (My thyroid tests showed normal). "Low PTH, probably from the Forteo" is how she summed that one up. I do a lot of walking for exercise and try to lift light weights, but that bothers my shoulders quite a lot. I used to do plenty of exercises with my balance ball, especially for my abs before I was diagnosed with osteo. I've exercised all my life. I love swimming, and used to be a runner, even completed a marathon. So everyone, including doctors, was surprised when the osteo showed up. It goes to show that genetics count a lot, too. (sigh!) But I guess if my lifestyle hadn't been a good one, the bone problems would've shown up earlier. Your advice is always appreciated. Thanks and blessings!
My doctor had told me not to have a bone density test before being on Forteo for 18 months because I would be disappointed. Apparently, the bone mineralization that needs to take place to show up on the bone density test doesn't take place that fast, although there is bone growth going on. Anyway, that's the best I can understand what he said. I had a very good gain with Forteo, but didn't have the test until I'd been on the drug for 20 months. Best of luck to you!
I was on Forteo for about 7 months, and it actually reduced my BMD by 10%, and it brought me down to a -4.8 and my hips to a -3.2. Additionally it lowered my Vitamin D to under the reference range. I stopped taking it back in April 2007, and taking many different supplements which include 5,000 a day of Vitamin D3. I also inject HGH, prescribed by my alt. dr., and take strontium every night. My endo dr. and my PCP both wanted me to continue on the Forteo, but with a 10% reduction in my density, I can't afford any further reduction, no matter what the dr. says to do. If I break a bone, it doesn't hurt them, only me, so I had to make the decision to go alternative. The other thing that got me about Forteo, even if you take it for the 2 years, you have to go back on Fosamax/Actonel/Boniva (one of those) or you lose all of the gains you made with Forteo within 6 months to a year. It really doesn't make sense to me if you make the density gains, you've got to go back on bisphosphonates, which have there own problems (osteonarcosis). So Shewolf, what will you do at the end of two years on Forteo? If you don't go on Actonel or something like it, you will lose everything you gained, if any. It's a problem most patients aren't looking at after Forteo, they think they will retain the gains without being on other drugs. It should be something you think about in your plan. Wish you the best in what you decide.
Hi spinewhine, naturalman et al:
Thanks for the encouragement, spinewhine. I think the doctor ordered the Dexa because it had been 2 years, to see if there had been deterioration during the several months when I wasn't on any bone meds. I think the next one will undoubtedly tell the tale! I heard so many stories in the Forteo training class from people who had stayed on various bone meds for several years and gone downhill, so to speak.
As for after Forteo, well, LOL, at my age (75) there may not be an after Forteo issue, although I am in reasonably good health other than the arthritis and osteo. But there is always the possibility of new drugs with less negative side effects. I could also take injections of bisphosphonates, which were my doctor's initial suggestion after I couldn't take Actonel, but at the time, even though the IV injections bypass the GI system, the mere thought of more bisphosphonates was more than I could endure. If Forteo eventually works and they okay it longer term, or the patch is approved, I'll probably stay on it. I can't take calcium supplements (I get calcium through my diet) and I tried strontium and it upset my stomach nearly as bad as Actonel. I admire all you're doing for yourself, naturalman, and feel sure you'll win the battle. Meanwhile, I think we're all praying for a more user friendly meds.
It is wonderful how we can all help and encourage each other by way of this splendid forum. Thanks to all of you!