Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group osteoporosis / osteopenia and AS

How many of you have had a bone density test done for osteoporosis screening?
How many of you were diagnosed with osteopenia (especially at a fairly young age) or osteoporosis?
If you were diagnosed, at what age, and how advanced was the disease?

I found the following, which was new to me, but maybe not new to you:

"Enthesitis in the spine initially produces osteopenia, but later reactive bone forms leading to fusion."

When I was 37 or 38, i started early perimenopause. because of this and my thin bone structure, i decided to get an early base-line bone scan done to screen for osteoporosis. i had to argue with 3 different doctors before someone would allow me to have the test. each doctor said,"you're too young." the doctor who finally conceded was a bit surprised at the results. I had moderate osteopenia of both the spine and the hip. No one connected the dots of my SI (and other musculoskeletal) symptoms and the osteopenia. To me, those two combined symptoms would be a clear indication to look at more than just RA. I have since been tested every few years and at least the osteopenia has not progressed.

Perhaps for those of us still undiagnosed or diagnosed with undiff spondy,
getting bone density results that show osteopenia would help with a diagnosis. What do others think?

sue

Hi Sue,
About a year ago, my rheumatologist had me do a bone density scan. I was diagnose with advanced osteopenia. My low back and both hips were shown significant bone loss. I too was not aware of this going on. I never thought of men having this. I always thought (please excuse my expression) the little ole' ladies got this.

I am now on Fosomax. I am not excited about it but was told (like the other messy drugs) that it is the lesser of the eavils to take it.

I am older, however, I am 60 this year and have been diagnosed with AS for 3 years now. I do not know how long I have had AS but think I have had it at least 5 years prior.

I have fusion in my SI and the beginnings of it in my thoracic area and my C6 and C7 joint.

I think it should be something for all to consider who has this active disease.

Bill

bill,

thanks for responding.
so far, my osteopenia hasn't progressed since the first time i was tested and doctors haven't suggested the meds.

i have problems with gastritis and am worried that when i need a med to control the bone loss, the meds will flare my gastritis which i mostly have under control. do you know anything about which meds may or may not irritate the stomach? is that something you even considered? how is fosomax in that department? i could research some more on my own when the time comes, but i like with everything else on this site, others experiences are invaluable.

sue

hi sue!
before i started remicade about a year and a half ago i had to get a bone density test and the TB test. i was 37 then and found out i had osteopenia in the hips or left hip i think to be exact. at the time i only took the remicade because it was supposed to help.

i had to come off remicade due to pneumonia, and repeated respiratory infections. as a matter of fact i need to ask my new rheumy what i can take to help me out. they checked my lumbar but couldnt get a clear result due to the fusion surgery i had there. i suspected something was wrong with my hips though because they were causing me so much grief.

are these meds for bone loss known to trigger gastritis? i know the remicade helped control the gastritis and colitis.
best of luck to you! buggy

Hi Sue, as a matter a fact, I had a bone density test done last year, ordered by my orthopeadic surgeon. I found out after the fact that it was a waste of time. According to my Rheumy, whom I spoke with after the test, lucky people with severe Osteoarthritis along with the AS don't get Osteoporosis. Huh, lucky me
Cindy

I have osteopanea,

Risk factors

1. IBD

2. AS

3. Steroids

4. unable to exercise


Dave

Not sure if your rheummy was right about AS not causing osteopania...osteosporosis...

I do n't think the bone density test will help in a diagnosis of AS,

I had a baseline bone density done several years ago, when my GP was certain I'd shrunk 2 inches!! She was wrong, just measured me incorrectly. Anyway, it was after that that I became really good about going to the gym every day, and also I started on Remicade. I had my 2nd bone density done last year and it had increased by 2.34%, which I hear is very good.

For what that's worth.

Hugs,

Hi, sue:

Everyone with AS is at high risk of developing osteoporosis, but AS is not the only cause, and it happens too late in the course of the disease to be useful in diagnoses.

I was diagnosed with osteopenia at age 51 and probably have osteoporosis by now, since the spine surgeon said that working with my spine is 'like screwing into wet drywall.'

I have lost over 6 inches in height since contracting AS in 1971, but zero loss since finding out the cause of AS in 1999. Today, I'm fighting with a lumbar fracture where the bolts for Harrington rods are inserted, so I need some specific treatments because after last time, my surgeon never wants to see me again (11 hour estimate turned into a record 20 hours).

Regards,
John

hi sue,

last year i had a bds because a chiropractor diagnosed me with osteopenia in the lumbar and SI areas. the bds results showed that my bone density is 80 percent of what it should be at my age of 33, and they seemed to think that was within the normal range. i'm not sure what percentage it would have to be before they diagnose osteopenia.

it would seem to me, though, that osteopenia at a young age would clue a doctor in that something was going in, as AS apparently can/does cause osteopenia at first. but i don't know??? sorry i can't be of much help. i'm just trying to gather the info here, myself. :P