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Wednesday, November, 25, 2009
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Meds don't work, What to do?

Pepi
11/20/08

I am a thin caucasion & after 2 yrs on Miacalcin and 8 years on Fosamax, my Dr took me off, because I continue to loose bone density. I'm 62, a dancer and I exercise. I believe Fosamax is responsible for my acid reflux that I have for years. I know Fosamax stays in my body a long time & I'm afraid to try the shots for obvious reasons.  I'm concerned that I'll "break apart"; any advice? Pepi

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Pam Flores
Pam Flores
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Pam Flores is a wife, paralegal, friend, advocate, and caregiver
a wife, paralegal, friend, advocate, and caregiver

I graduated from the University of West L.A. School of Paralegal...

Thursday, November 20, 2008

Hi Pepi:  First, congrats on giving your treatment as much time as you have to try an improve your t-scores.  Unfortunately, for reasons I don't understand, some people don't see improvements after a courageous try.  Did your scores actually get worse, or did they stay the same.  Maintaining the same score over time is still considered an improvement since you didn't actually lose ground with your scores; most feel if you didn't get worse, then the drug worked to maintain your bones without loosing more bmd.  If your scores have worsened I'm really sorry for that since you did all you could.

 

Your weight bearing exercise sounds excellent so I would ask are you including supplements as well?  You need Calcium and D3 in conjunction with the exercise.

 

As far as what you should do now, is something you'll have to decide with the help of your Dr.

 

The only other possibilities left on the drug front would be, Reclast (once yearly), Boniva (quarterly), Forteo, HRT, or Evista.  Reclast and Boniva are administered via an infusion, and Forteo is a daily injection.  Some feel that if benefits aren't seen with antiresorptives, then anabolics *might* be the next step which is Forteo.  Of course your Dr would have to agree with this and tell you his/her feelings on trying this different approach.  All the drugs listed above *except* for Forteo are called antiresorptives which help to slow bone loss.  You may have a situation where you need to boost your bone formation, and Forteo is the only drug that does this.  Unfortunately Forteo is expensive, and may not be what your Dr has in mind for you, but you could discuss it with them.  Many insurances cover Forteo, but then there are some that don't, so that would be a consideration that's important.

 

Here's a link on Forteo from the Cleveland Clinic which explains how the drug works, it's a very easy to read paper on all aspects of Forteo.  If you want a full list of side effects the FDA pdf on Forteo will give you that.  There's also a natural alternative called Fosteum, if you would like to read about that.

 

Read as much as you can, and discuss all the options left with your Dr.

 

I hope you can find something that works, since you really have given it the good old college try.  Congrats on that, even though you didn't see the results you expected.

 

Good luck and I hope you can find something that will work for YOU.

Pam Flores
Pam Flores
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Pam Flores is a wife, paralegal, friend, advocate, and caregiver
a wife, paralegal, friend, advocate, and caregiver

I graduated from the University of West L.A. School of Paralegal...

Thursday, November 20, 2008

Hi again:  Sorry Pepi, I forgot to mention something that may ease your mind about the condition of your bones.  Have you tried the FRAX algorithms tool provided by the World Health Org?  Fill out this calculator, starting by clicking the calculation tool tab, then country/ethnicity, because it will give you a good idea of the conditions of your bones and the possibility of a frax over the next 10 years, which is most likely better than you think. 

 

If you have trouble with the calculator don't hesitate to post back with questions on the 2 scores you'll get at completion, which are "major osteoporotic" and "total hip," 

 

Drs are now using this calculator along with the dxa to give a more well rounded idea of bone mineral density.  Be sure to fill in all the necessary info, which includes your t-score for your femoral neck--instead of the total hip--which is on your dxa print out. 

 

Your frax risk increases once you've had 1 frax, but since you didn't mention one, you're doing well.

 

Another thing to consider, is that t-scores alone, are NOT the sole predictor of frax's.  You could have a low t-score and no frax's or have a relatively good score and sustain a frax.  Many other variables factor into whether or not you'll have a fracture, as you'll see when you answer the question for the tool.

 

Good Luck...

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