Osteoporosis

[purpleangel28282]

I was hoping to get some responses by posting here instead of in the teens section (which I tried and haven't received any responses from), hope nobody minds! Anyways, I found out yesterday that I have osteoporosis and I was wondering if anyone else has it and what it has been like for them.

 

[anonymous]

I have osteperinia (ap??). I think its a precurssor to osteoperosis. It probably explains why I broke my toe by stubbing on a milk crate a couple years ago. I DID NOT hit it nearly hard enough to break it in my opinion. THe only thing they did about it was up my calcium and vitamin d suppliments.

 

[anonymous]

Hi,
I know, that osteoporosis is quite common when cf-people get older, so you are unlucky to have it already.
Your doctor will give you a high dosis of calcium and Vitamin D as longtime therapy, but you should try to drink/eat lots of milk products, get some sun every day and -if you still can- do some sports like walking/biking . Ask the doctor, what you should drink, because the phosphates which are for example in Coke, are very bad for the calcium you need.
Wish you the best

Uli,42,Germany,cf/cfrd

 

[nobody]

Good Day,
I had osteoporosis too. You could literally see thru my bones on my bone scan!
Dr put me on extra calcium supplements (1000 mg/day softgels - Viatmin Shoppe) - Extra Vitamin D and magnesium/phosphorus.
I was also put on Fosamax (mostly prescribed for post-menapausal women - I am a 38 year old male! - I take some kidding for that!)
There is a medicine now for once a month - not once a week.
It takes a while (years) for bones to "rebuild" - but they will rebuild. I was upgraded to osteopenia after 2 years.
Everyone takes differing amounts of time to rebuild.
The reason for osteoporosis primarily is due to our fast metabolism, steroid use and carbonated drinks.
Maybe add some resistance lifting (ankle/wrist weights is what I do)
-steve

 

[purpleangel28282]

Thank you all for the responses, I really appreciate them. Uli, it is unfortunate isn't it, but we all have our problems. I actually do drink tons of milk and have milk products, however I also have an addiction to soda...which I've been working on and now I only drink one can of soda a day verses two or three like I used to, but I'm still trying to cut back. I definitley need to get out more and be in the sun/exercise! Steve thank you so much for stating the fact that your bones can become better, I was under the impression they didn't get too much better but instead it kept them from growing worse (I still have a lot of research to do). About the Fosamax, lol, sorry that it's a "woman's drug" I guess you could say since it's predominantley used by them, but hey, look at me, I'm 17 with Osteoporosis!! Something I thought only old people were supposed to get (people like around 60). Thank you all once again!

 

[anonymous]

My 10 year old boys have to take 3000mg calcium per day as well as a highly enriched diet of dairy. They have been on the calcium supplement for about 2 years now and their last bone scan had finally improved. One broke his ankle just before the start of the school year last summer (he wasnt complaining!). They were worried that it was because of his bones being so thin, but little boys do have injuries playing soccer as far as Im concerned. Since then there has been no mishaps. Even though their boys scans have improved everyone including myself has agreed to keep them on the high calcium intake but as more of a preventive measure now.
Mel

 

[cfmomma]

I have osteoporosis due to long-term high doses of prednisone (from an unrelated disease). I broke my toe just from walking home from school when I was 12. I have also broken my foot and elbow. I take calcium, b12 shots and vitamin D, I tried Fosamax but it was too hard on my stomach. One that helped is weight bearing exercises, but you must start out using very light weights and gradually increase. I am guilty of drinking too many cokes also and have limited myself to one every few days. You can increase your bone-density, it will take work but you can do it.

 

[purpleangel28282]

Thank you so much Mel and Sheli, all of your input has really helped me a lot! Isn't this site great? I love it!

 

[anonymous]

Hello Everyone,
This is my first post to the CF web site.
I am a soon to be 32 yr. old CF, Rhematoid and osteo arthritis patient.
I am taking enbrel at this time for the rhematoid and osteo arthritis.
I live in a small rual town so not many people who I can talk about these
conditions.
Not sure that there were many people with CF and the other conditions.
I've been led to belive that having CF & arthritis was rare.
By reading these posts I'm thinking this is untrue & as bad as I hate other
people may be dealing with these conditions too it is some what of a comfort.
To say that maybe I'm not alone in these things. I am also a Coca-Cola addict.
To the point I know it is affecting my kydneys and am trying very hard to slow
down because of this and my bones.
I will post again and look forward to reading replys.

Thanks, Becky.