Folks,
For those of you who have CF-related osteo, many are on bisphosphonates like Fosamax, Boniva, Actonel, Atelvia, Reclast or Forteo. I'm not recommending that you replace what your doctor has prescribed. Keep taking what you're doctor recommends.If nothing is working, the alternative is certainly worth discussing with your doctor. I want to share my experience in hopes that it helps others with CF-related osteo.
Icannot not take bisphosphonates and my bone densities dropped in the low negative threes or in the danger zone. The bone density scale is typically +1.0 to -4.0. Osteopenia is -2.0 and osteoporosis is 2.5 and lower.
From 2006 to 2010, I struggled with all sorts of calcium supplements and none of them worked. <em>I mean none of them.</em> Time was running out. I was actually sliding backward. MyCF Endocrinologistwas ready to put me on Forteo. That's serious! Then I was introduced to something called Grow Bone by Vitamin Code, owned by Garden of Life.
I just had my annual DEXA scan today at Emory. The results for 2012show that for the first time in six years, I'm above osteopenia range for everything! My left, right hips and my L1-L3look great. However...L4 is still stubborn at -3.0 but I'm working on it.
The bottom line is that I received an overall density increase of 3.9% from the 2006 baseline. Last year, 2011 I received a 5.3% increase from baseline. so for me, the product really works. The difference is that I didn't excercise as much this past year so I need to get busy.
My CF endocrinologist at Emory is aware and interested inthe productand I'm the guinea pig. I want to share this with everyone in the CF community who suffers from osteo. If what you're are taking is working, keep taking it. But if nothing works, consider this. I would be remiss for not mentioning it.
Randford (49, ΔF508, P140S, CF-related osteo)
For those of you who have CF-related osteo, many are on bisphosphonates like Fosamax, Boniva, Actonel, Atelvia, Reclast or Forteo. I'm not recommending that you replace what your doctor has prescribed. Keep taking what you're doctor recommends.If nothing is working, the alternative is certainly worth discussing with your doctor. I want to share my experience in hopes that it helps others with CF-related osteo.
Icannot not take bisphosphonates and my bone densities dropped in the low negative threes or in the danger zone. The bone density scale is typically +1.0 to -4.0. Osteopenia is -2.0 and osteoporosis is 2.5 and lower.
From 2006 to 2010, I struggled with all sorts of calcium supplements and none of them worked. <em>I mean none of them.</em> Time was running out. I was actually sliding backward. MyCF Endocrinologistwas ready to put me on Forteo. That's serious! Then I was introduced to something called Grow Bone by Vitamin Code, owned by Garden of Life.
I just had my annual DEXA scan today at Emory. The results for 2012show that for the first time in six years, I'm above osteopenia range for everything! My left, right hips and my L1-L3look great. However...L4 is still stubborn at -3.0 but I'm working on it.
The bottom line is that I received an overall density increase of 3.9% from the 2006 baseline. Last year, 2011 I received a 5.3% increase from baseline. so for me, the product really works. The difference is that I didn't excercise as much this past year so I need to get busy.
My CF endocrinologist at Emory is aware and interested inthe productand I'm the guinea pig. I want to share this with everyone in the CF community who suffers from osteo. If what you're are taking is working, keep taking it. But if nothing works, consider this. I would be remiss for not mentioning it.
Randford (49, ΔF508, P140S, CF-related osteo)