Bone Density

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Creepy Lurker

Creepy Lurker

Joined
Jun 29, 2007
Messages
689
I had to chase up the results of my BD scan. Looks like I have the same density as a 60 year old woman. Damn steroids :(

'Below average at the femoral neck' and 'More below average at the lumbar spine'. Still acceptable though.

Should I start taking calcium? Will that just cause problems elsewhere?




edit: I should probably have put this in the 'Treatment' forum. Any mod out there fancy moving it for me?
 
I'm 'at risk' of osteoporosis and have a DEXA scan every few years, so far so good but I've not been on steroids. The advice I've been given is to make sure you get plenty of calcium, preferably from green leafy veg - they dont know about the Crohn's yet!, and do lots of weight bearing exercise - the more the better. Taking calcium of itself is not particularly helpful.

I'd have thought the doc's that ordered the scan should have given you the appropriate advice considering your medical history. If not, talk to your GP?
 
beth said:
I'm 'at risk' of osteoporosis and have a DEXA scan every few years, so far so good but I've not been on steroids. The advice I've been given is to make sure you get plenty of calcium, preferably from green leafy veg - they dont know about the Crohn's yet!, and do lots of weight bearing exercise - the more the better. Taking calcium of itself is not particularly helpful.

I'd have thought the doc's that ordered the scan should have given you the appropriate advice considering your medical history. If not, talk to your GP?
Click to expand...

The GP had the report for months and didn't bother telling me. To be honest, it does say that I should 'carry on as normal' and repeat the scan in 2 years. If there is a decline then I'll be given bisphosphonates.

I'll probably let my GI nurse know about it and see what she has to say.

The scanning machine was pretty cool though :D
 
i've moved the thread for you :)

i would say definitely yes to the calcium.. i'm also showing signs of osteoporosis, they called me borderline the last two times i had BD scans, am due for another one soon. i'm taking calcium and vitamin D...
 
i scored as a 70 year old woman when i got mine done (and they did say woman? why not compare me as a man??????)

i've had no problems with calcium (with vitamin D) tablets, but those fish oils seem to give me extra pooping power, so i came off them.
 
dingbat said:
i've moved the thread for you :)

i would say definitely yes to the calcium.. i'm also showing signs of osteoporosis, they called me borderline the last two times i had BD scans, am due for another one soon. i'm taking calcium and vitamin D...
Click to expand...

Cheers ding! :)

From what Dr Google tells me, it's based on the t-score, with anything between -1.0 and -2.5 being osteopenia, and anything less than -2.5 osteoperosis. My neck is showing as -1.1, while my spine is down to -2.0.

I'm not sure how close you need to be to -2.5 to be borderline. I might try calcium, although I've heard some horror stories around here about monster kidney stones.. :eek2:

jed said:
i scored as a 70 year old woman when i got mine done (and they did say woman? why not compare me as a man??????)

i've had no problems with calcium (with vitamin D) tablets, but those fish oils seem to give me extra pooping power, so i came off them.
Click to expand...

The official report only had comparison charts for women aged 50+. I suspect it's relatively rare for us 'young' men to have these kind of issues :p
 
Strange, as the Addenbrooke's scanner and software has tables for both sexes and ages <50.
 
I might see if I can get a full copy of the report. This is just a one page fax that was sent to my GP.

Apparently, the Oswestry unit is supposed to be a world leading centre for bone studies. A bit disappointing that I have to chase them up myself.
 
lol i spent many hours in Oswestry in August.. it's not far from where we hired a holiday cottage for a week :D

regarding Jed's 'female' comparison, i think i can answer that. a woman of 70 will have a worse bone density condition than a man of 70, simply because of the menopause.. as soon as a woman's estrogen levels start dropping off, her bones are losing density, and she will be heading towards osteoporosis diagnosis, the older she gets..
 
ding said:
regarding Jed's 'female' comparison, i think i can answer that. a woman of 70 will have a worse bone density condition than a man of 70, simply because of the menopause.. as soon as a woman's estrogen levels start dropping off, her bones are losing density, and she will be heading towards osteoporosis diagnosis, the older she gets.
Click to expand...

so if you want in term of man, you'd be equal to like a... 156 year old man.
 
fenway1971 said:
I've never had a BD scan. Is that something you do regularly?
Click to expand...

I think that if you're on steroids for a significant amount of time, then it's probably a good idea.

This was my first, despite the fact I've been on them for years.

Looking at the result, I should probably have had one sooner.
 
I had BD scans done back when I was on steroids so much (BR = before Remicade). I had osteopenia. I can't remember the name of the nasal spray they put me on - but my GP told me it was a synthetic version of this stuff derived from whale sperm! My husband just LOVED to tease me about that - but apparently it helped because the last scan I had done was all clear - I mean, I don't have GREAT bones, but the osteopenia diag went away.
 
the osteoporosis issue isn't just to do with being on steroids.. just having Crohn's is enough to affect bone density, as are many other factors, including genetics.

my borderline osteoporosis diagnosis was despite my never having steroid medication.. but i had Crohn's throughout my late teens when bones are still forming & strengthening..
 
Creepy Lurker said:
I think that if you're on steroids for a significant amount of time, then it's probably a good idea.

This was my first, despite the fact I've been on them for years.

Looking at the result, I should probably have had one sooner.
Click to expand...
Creepy, I don't know how old you are(You are male right?) but testosterone levels in men can change how you absorb calcium as well. Maybe check out Dr. Google for more info. Just a thought.
 
Peaches said:
I had BD scans done back when I was on steroids so much (BR = before Remicade). I had osteopenia. I can't remember the name of the nasal spray they put me on - but my GP told me it was a synthetic version of this stuff derived from whale sperm! My husband just LOVED to tease me about that - but apparently it helped because the last scan I had done was all clear - I mean, I don't have GREAT bones, but the osteopenia diag went away.
Click to expand...

You Whale sperm sniffer you! Ugh that must have been hard to get your head around!

Does anyone know how quickly bone problems can happen when on Pred? I've been tapering since mid july and am taking calcium supplements. I'd hate to think my bones are falling apart and I don't know about it!!??

At what point does one with Crohns normally get their bone density looked at?
 
dingbat said:
the osteoporosis issue isn't just to do with being on steroids.. just having Crohn's is enough to affect bone density, as are many other factors, including genetics.

my borderline osteoporosis diagnosis was despite my never having steroid medication.. but i had Crohn's throughout my late teens when bones are still forming & strengthening..
Click to expand...
Oh geez, I wasn't aware of that! Kinda makes me go hmmm now since I haven't had a DEXA scan in ages and I don't take supplements because it seems to mess my gut up. Will have to check in with the doc I guess.
 
I asked my GI for a bone density scan from being on steroids and he said that it wasnt nessasary after being on them for a year. But I still want to see how this has affected my body. I might try and push this with my Family Dr as my GI doesnt seem to be having any of it.
 
im 22 and a male, My Hip, knees and part of my spine are worse than a post menopause lady in her 50s. Its horrible.

It wasnt from prednisone but from the nasty absorption issues
 
fenway1971 said:
I've never had a BD scan. Is that something you do regularly?
Click to expand...
i would look into having it done.
my last scan was "ok, for a woman of my age!!!" but i didnt like the way she said "of my age"!!
duee to have another one in the new year.
 
No, it's just a bother, like the same level of bother of an ultra sound. You just lay there while this device above goes over you, reading the feedback, although you do have to have props under your calves and all to get the spine as parallel to the device as possible, but the average person shouldn't be uncomfortable or anything, they just really want you laying still for a bit.

I had to have one done and this huge lab guy (I mean muscular not fat, we talked about lifting while I had it done), a little older than me at the hospital last year, he'd congratulated me on the weight lifting because he said (which I already knew and Beth mentioned above) that resistance training increases, by physiological necessity, the density of the bones. It's similar to the way a callous forms on skin, to aid the body in extra harsh stimuli, heavy weights Creepy, heavy weights. :D

I was still put on Rx Vit D tabs, but the results were actually normal/healthy. It's just that there was no end in sight at the time for the pred to taper yet, so they did it preemptively. I was relieved the pred didn't affect my bones, just my damned skin and personality!
 
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I had an ultrasound on my leg once to look for clots. It was sooo awkward. They glooped up my whole leg and did my groin area too. AWWkward turtle.
 
No, no glooping and no awkward turtles.

I almost fell asleep during my thyroid ultrasound about a year ago, as I lay there for about 10 minutes with HEATED blankets, covered up, with Celine Dion's "I Drove All Night" playing on the speakers while they talked to my endocrinologist on the phone in another room. It was heavenly. :)
 
fenway1971 said:
I've never had a BD scan. Is that something you do regularly?
Click to expand...

Aye, have never had one either. Though, I have not taken steroids in about 10 years. The doctors I have had the last few years wont give them to me.
 
katiesue1506 said:
do the scans hurt?
Click to expand...

It's a glorified X-Ray machine. The most invasive it got was having to pull down my trousers slightly.

It was really hot that day, and they had aircon. I could have stayed all day :)
 
having mine today.... am going to try & forget about it once it's done, got a feeling i won't be happy with the results.
 
CanadianBella said:
I asked my GI for a bone density scan from being on steroids and he said that it wasnt nessasary after being on them for a year. But I still want to see how this has affected my body. I might try and push this with my Family Dr as my GI doesnt seem to be having any of it.
Click to expand...

You tell your GI you know a 25 year old male with crohns that had osteoporosis after 6 months of prednisone. My doses weren't even very high (20mg average though I went up to 60mg). You're at way more risk than me. Now they've screwed up and the damage is already done. It'll be hell trying to fix it while still giving me pred.

It's really pathetic how doctors ignore official protocol for drug monitoring. Frankly they should be getting sued for the damage they cause by ignoring everything.

Proper protocol says that you should be signed up for a DEXA scan right at the moment they write that prednisone prescription. You should also be getting metabolic panels and vitamin D levels every few months to watch for deficiencies. In fact anyone on anything beyond a 2 week dose pack should be on high levels of calcium and vitamin D, no ifs ands or buts. You don't play around with drugs like prednisone or you get burned. Or more accurately, you burn your patients.

You can get Cal+D at sufficient doses over the counter. Walgreens has a good mix that has high doses of Cal and D and also throws in a few other minerals needed to support the absorption and processing of doses that high. A multivitamin does not have anything remotely close to what you need being on prednisone.
 
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I agree with Colt. As Canadian Bella is from the same country I am in, I find that in our situation, getting a Gp, GI appt has long waiting times. However it was my Gp 7 years ago who recommended a bone scan because I have knee problems and wanted to see why before I was sent to a specialist. Not because I had Crohns but most gp's here know NOTHING of nutrition and my dietician knows more about Crohns than an older surgeon did. It really depends on the premed courses doctors take. My daughter is in University and she is taking Kenisiology which also has the study of nutrition and biochem to know the meds inside and out and psychology to understand her patients. Your body and mind controls everything and therefore some doctors could lack some areas whereas a specialist usually only knows their field.

This forum really teaches the new Crohnie what you need to know I have learned alot from here.
 
:) thanks Creepy and KatieSue.. not sure about the iron bones lol!

so, had it done, wow the technology has changed in only 2 years since my last one... the scanner was sending images to the pc monitor whilst still scanning, and the radiographer gave me an immediate result without me asking. seems i've inched more towards osteoporosis than i was.. possibly still borderline but she recommended that now is the time for treatment such as phosomax (sp?) or similar.. something else to discuss with my surgeon next week.

has anyone has the yearly infusions?
 
thanks for the link, KatieSue. i was taking Fosomax a few years ago, but despite the standing up, i did begin to get very sore in my upper stomach and esophagus (i am prone to esophagitis anyway) - hence me wondering if the infusion would be better for me.

it's interesting to read in that Wiki link that it is also used for Paget's Disease - my father had this.
 
Not a word about bmd meds for me and I'm already at osteoporosis. Gender and age discrimination really. I'm not a happy camper lately.

I really wish Canadians wouldn't push the wait times thing. The wait times are the same or shorter than equivalent places in the states. I've been through both countries' medical systems.
 

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