CF-Related Osteoporosis

[randford]

<div><font size="2" face="Arial, Helvetica, sans-serif">I'm an
adult who was recently diagnosed with CF. I just had a BMD test
done today. I'm 30% below what I should be for my age. I have
osteoporosis. It all makes since. It's CF-related. According to a
CF-BMD study, Maldigestion, malabsorbtion, and undernutrition
result in vitamin D deficiency which plays a significant role in
the skeletal demineralization of adults with CF. Then there is
Hyponadism. Low androgen levels can contribute and then there is
age, of course. It's very common among CF patients.</font><br>
<br>
So for those of you with adult CF, it might be wise to get
this test.<br>
<br>
Randford, 43/CF<br>
<br>
</div>

<div> </div>

 

[CowTown]

Hi Randford,

I have osteoporosis too and now take a daily calcium pill. I never took one before, and have had some bone loss ove the past few years. Just so you know, they've told me that you can improve your bone density levels if you start taking calcium and exercise on a regular basis. Yes, I think it makes perfect sense too with all thay we lose through our food intake. It's great you just had that test done to see where you are.

 

[randford]

<strong>MyNewfy,</strong><br>
<br>
Thanks for the info. It's funny. At 40 I started taking a
supplement as a deterrent. Too much Paul Harvey, I guess. Then I
stopped taking it. You know how that goes. Life gets in the way.
After diagnosis, I bought some supplements on the way home from the
doctor.<br>
<br>
Hang in there!<br>
<br>
<b>Randford,</b> 43/CF

 

[thelizardqueen]

Randford,

I don't have osteoporosis, but I do get tested for it on a regular basis. Bone scans are one of the regular CF tests that my specialist does.

 

[melleemac]

Its not just adults with cf who have to worry about this. My twin boys have had low density bones for the last couple of years and they just turned twelve. Every year they have a bone density test done and also a bone age test done. They have been on Caltrate 600, 1500mg twice a day for the last couple of years.
Mel

 

[bmombtoo]

You've all been reading about Josh. Well about 2 years ago my knee
got huge. After knee surgery I was told I had osteo and that the
joint is so damaged it will have to be replaced. Both knees.<br>
<br>
Yikes.....too many creepy similarities here.

 

[blindhearted]

I also have Osteoporosis. I got tested Sept 05 and started a treatment. I tried Actonel and Boniva with terrible side effects. I now take Forteo (began Nov 05), it is a daily, subcutanious (sp?) shot that is precalculated. It is meant to be taken for 22 months (almost 2 yrs). It suppose to rebuild the bone. I dont know how it is doing yet...I feel it is working...however, I go for my bone scan Aug 24 to see if the shot is doing its job or not. When I find out, I will give an update.

Added: Side effect wise, I have been handling Forteo very well. One great thing is it can be taken at night and sitting up is not required. You can lay down right after you take it (it actually recommends it in the insert info and by my doctor). So I do my shot, go to bed and sleep through any side effects that might be going on.

 

[NoExcuses]

what type of side-effects did u get?

 

[blindhearted]

Extreme bone pain (it hurt to cough/breathe deep, do treatments/vest, couldnt stand up straight or walk w/o help, required me to take a narcotic for pain), fever (101 - 102, its very uncommon but happened), vomitting, loss of weight due to not/unable to eat/keep food down (i got down to 105lbs), dizzyness, triggered migraines...things that interferred with everyday life (couldnt go to work/leave the house) and what it was doing to me out ruled the benefits, specially since there were other options. when the medicine was stopped, the side effects cleared up with in days, except weight loss that took about 2-3 months to get my weight back up to 115lbs.

 

[NoExcuses]

wow, those are extremely rare side effects. what a bummer. forteo is a great med, though. i'm glad it's working for you.

 

[catboogie]

i have low bone density, osteopenia not osteoperosis, and i have been able to improve my bone mass with calcium and exercise over the last couple of years. <img src="i/expressions/face-icon-small-smile.gif" border="0">

laura

 

[lilmac7]

I recently did my test since the last one I had done in Nov 02 and it came back that I increased the density in my spine by 13% and by 4% in the hips so it can be improved, before I had the test done I had no clue but I would have back pain quite often, by the way I dont have osteoperosis, it says osteopenia of the spine and normal hips, the only thing different I did was took up weightlifting and eating alot more dairy stuff, before the test in 02 it was many years before that that I had a cf checkup because where I live there's no specialist and I couldn't get insurance so was trying for the longest time to get coverage thu the government here, very long story but I'm coverred now thank God. Anyway one thing that they seemed to have stressed to me when they were evaluating my diet to see if I needed any additional suppliments was intake of things that contain caffein ie coffee/coke/pepsi (which I drink everyday almost) apparently it deteriorates the bones so if you're taking many things with caffein then you need to take in more stuff with calcium or a calcium suppliment to compensate, also vitamin D is important as well but since I live in the Caribbean and get lots of direct sun they said that I would be getting lots of that, the further away from the equatot you live the less you get from the sun so a suppliment of that may also be needed