Question of the Week: Is Your Osteoporosis Treatment Working or Not?

Hi Priya, thanks for joining us...  There is a test you could have, if available, but it won't give you a t-score, it will only tell you how much bone you are losing or gaining.  If you could find out if this test is available it's a bone marker test, and is done on blood or urine.  I have the 24 hour urine N-telopeptide test and it will give you a score that is compared to normal for your age.  These tests are done more than once so they can be compared to one another, usually if you are taking some form of treatment.

Here's an article you can read about bone markers and see if they have this test in your country.  You can still use the QUS for screening purposes, since most don't recommend it for doing comparison on bone density increases/decreases.  Since the DXA is so difficult to find or have, I don't see why you can't use the ultra sound as a substitute.  It may not give you as much info as a DXA but it's better than nothing.

Also have you filled out the World Health Org's fracture algorithm.  This tool will give you a total precentage for your future fracture risk.  You'd need to have your femoral neck score and you also need to enter the info in raw scores (g/cm2) and it will give you a result for risk assesment.  Oh, and you need to know the manufacturer name of the DXA.  This tool is included in some DXA's already, but not all.  Click here to get to the tool and enter in all the info and see what you come up with.  You might be pleasantly surprised at your risk factor, if your lifestyle, genetic, and past medical history info is good.

I wouldn't think muscle fatigue is a symptom of osteoporosis, but who knows.  Any balance exercises you can do will help to protect you from falling and improve your posture.

Try the Frax Tool and see what you get.  If you need to locate some more info on your original DXA, see if you can't get it from the Dr or imaging center you had the DXA at.

Good luck...

Hi Phyllis thanks for the kind words, and I do hope, as well that we can get many to join us on this discussion.

You are very lucky to have had your Graves dx'd, treated successfully, and I'm sure that has helped your bmd greatly.  It's so important for us all to look for secondary causes for osteoporosis since they are treated differently than normal age-related bone loss or bone loss due to estrogen/testosterone cessation.

If you have any ideas for our other members who's questions are featured here, please give us any thoughts you may have.  Each of these members have had some form of tx failure, and my original advice was to make sure they didn't have some other medical disorder or were taking some medication that causes bone loss.  If either of these are the case, they won't be able to increase their bone scores until the secondary problem is addressed and treated.

It sounds like you are doing all the right things, without obsessing over it, and it's certainly paid off for you.  We can all learn a good lesson from you common sense/out of the box thinking.

Do you take any other supplements like vitamin K1 of K2? 

Keep up the good work, and let us know if you have any ideas for rbonnie, Kat, or Bony Marorni, and I do hope they join us so we can talk to them personally about each of their issues to see if we can help in any way.

Thanks again, it's always a pleasure talking to you!!

Hi Vicki, so glad you could join us.  I'm so sorry to hear that Fosamax and Forteo didn't work for you.  Forteo is really expensive and it is unusual for some one to use it beyond 2 years, but Drs will do that in certain circumstances.

I took Forteo and did really well, but we all react differently to these meds.  I sure hope the Miacalcin works. 

Have you ever had your bone markers checked?  Here's an article on it that explains how it works and what the test measures.  I have the 24 hour urine N-telopeptide test which will tell your doc how much bone you're losing or gaining while on a treatment, or you can get a baseline reading if you weren't taking anything.  Our bones excrete certain components into our blood and urine, so my doc tests my levels a couple of times a  year to see if the treatment I'm on is working or not (Evista).

MS is a secondary cause for bone loss, so that may be playing a role in your osteoporosis.  Here's two links from the NOF on medications and medical disorders that can cause bone loss.  I don't think MS is listed at the NOF, but I know it is a cause of bone loss.  The NOF has other updated lists that explain the connection if you'd like to read further from either of those two links.

Good luck with your exercises and with your supplements, given your limitations. 

Hopefully the Miacalcin and the vitamins will help a lot.

Thanks so much for dropping by and let us know how you do on the next DXA.

Pam

Hi Vicki, I forgot to mention something that you brought up that is sooo important in dealing with bone loss.

You mentioned that you felt similar to Phyllis with regard to being afraid that you'll break.  This is a very common feeling that most of us go through when first diagnosed.  With time, though, you'll feel less fragile and be able to get past this horrible feeling.  Don't forget that DXA's only measure our bone density and not our bone quality, so until they can come up with a way to measure quality were stuck with just having a bone mass measurement.  Many people have good quality bone but not a lot of it, so you could easily be one of these especially if you haven't had a fracture.

Keeping an eye on our stress levels is important for many reasons, one is it just doesn't have any positive effects on our bodies just negative, so whatever you can do to avoid as much stress as possible is fantastic.  Massages, stretching, meditation etc are all good things to help control stress levels.  Once we're stressed our cortisol levels go up, and when this happens it attacks our bones through our cortisol, calcium, phosphorous and vitamin D levels.  If you can get all of these checked it will help to give you a better idea how you are dealing with stress from a biological stand point since these levels will go back to normal once we have a way to deal with stress constructively.

It must be really difficult to be in a wheelchair so I do hope you can handle the stress and physical limitations of this in a productive way, and I wish you all the luck and strength you need.

Thanks again for joining us, and I just wanted to mention those tests you should watch that are all affected by high levels of stress.  I also use visualization and targeted day-dreaming that you do while listening to CDs on the topic, and it really helps with pain, stress and sleep problems.  If you need the names of the tapes I use just let me know; they are working and recently the author put out a series for osteoporosis where you visualize your blood and bones working to replenish and grow new bone.  Who knows if this will work but it certainly can't hurt since we know it works on other things like heart disease, high blood pressure, stress and many other medical disorders.

Hope you had a wonderful holiday weekend, and if you have any advice for our other members about treatment failure and how you've dealt with it, that would be great.

Take Care,

Pam

Hi effie:  Could you post this over at our Forteo Question of the Week here?  I do have some suggestions on tests you could have that will tell you if the Forteo is working, but I want the Forteo group to be able to read it, so if you could re-post at the link above that would be fantastic.  Sorry for the mix up on where to post about Forteo.

Pam