Husband has osteopenia from steroid use :-(

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PV
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Date Joined May 2006
Total Posts : 1177
   Posted 2/26/2010 10:39 AM (GMT -7)   
Ok, I knew the steroids would have had an impact on his skeletal structure, but I was still hoping against hope that things would turn out normal. So, here were his test results from the bone density scan:

Hips/Legs -> -0.2 to -0.3 (normal range)
L1 vertebrae -> -2.2 (osteopenia)
L2,L3,L4 -> -1.3 to -1.4 (slight osteopenia)

The person who did the bone density scan noted that there was some bone loss; but it wasn't osteoporosis. She felt that he would most likely just have to continue taking calcium and vitamin D supplementation, and stay off steroids for a while, and hopefully that'll improve things. She felt that at these scores, it probably doesn't warrant any other medication. Of course the doctor will call us back once he's had a chance to review the results, and tell us what he wants to do. She also said that L1 is the smallest of the vertebrae and that the additional bone loss was to be expected.

Anyway, my question is, what do you folks think of these numbers? What do you think the doc should do? Should he just take extra calcium & vitamin D and keep with that, and do more weight bearing exercise? In addition to that, should be also be on some other medication like reclast or boniva? Advice please!

Thanks for your help.
PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Crohn's in Remission since June 2008
C-diff recurrence Sep 2009
Reactive Arthritis Nov 2009
Currently c-diff free
Stomach Flu Feb 2010
Canasa (1gm), Lialda (4.8 gms), Remicade (6 weeks), Pred (5mg every other day)
Hoping to stop pred, and move remi back to every 8 weeks soon
Currently In Remission


Becky77
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Date Joined Dec 2005
Total Posts : 1768
   Posted 2/26/2010 10:47 AM (GMT -7)   
How old is your husband?

I'm only 32 and I had a bone density scan a while ago and have osteopenia as well. I don't remember the numbers, so I can't comment on that. I went to an endocrinologist, and he said just to take vitamin D and calcium. He prescribed vitamin D that I just have to take once a month, which is really convenient. You could look into that. Also, he said because of my age, to take 1000mg of calcium daily. He said doing that may put me back to the normal limits when I retest. I have to have a repeat bone density scan in a couple years, and we'll go from there!

Also, reclast and boniva aren't used for osteopenia, usually just calcium and vit d.

He did also say that weight bearing exercise would be good, but he understood that with CD comes fatigue, so he said just to do what I can. I try, but don't exercise as much as I should.
Becky

32 yr old female-dx with Crohn's in '97 after emergency resection and appendectomy, 2nd resection '05, Bilateral pulmonary emboli 10/09
Currently on Humira, Omeprazole, Effexor, Seroquel, Calcium, Vit D, Coumadin


PV
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Date Joined May 2006
Total Posts : 1177
   Posted 2/26/2010 11:01 AM (GMT -7)   
My husband is 45 this year, so he's not quite as young. He is already taking a lot of calcium and vitamin D, because he's been on steroids, and we've been worried about bone loss. He's also been taking zinc. When sick he's been unable of course to do exercise. But he has recently begun doing more exercise, and hopefully that'll help. Maybe the doc will prescribe even higher doses of the vitamins than what he's taking right now.

I worry of course about the future - the steroids help him when he needs it . . . what the heck are we going to do now? Just turn down the steroids? Opt for surgery?

At least now he's off the steroids for now. I hope that continues for a long time, and he can regain some of that bone density again. I keep telling myself not to imagine horrible things in the future - like him in a wheelchair because he feel down and broke his hip. It's not working so far today. I guess our best hope is to keep him off steroids, and get more exercise, and more of the good vitamins, and follow doctor's recommendations, and keep checking his bone density to see if we see improvement.

Has anyone gone from being in the osteopenia range back to normal? Is that possible or am I just dreaming?

PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Crohn's in Remission since June 2008
C-diff recurrence Sep 2009
Reactive Arthritis Nov 2009
Currently c-diff free
Stomach Flu Feb 2010
Canasa (1gm), Lialda (4.8 gms), Remicade (6 weeks), Pred (5mg every other day)
Hoping to stop pred, and move remi back to every 8 weeks soon
Currently In Remission


Becky77
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Date Joined Dec 2005
Total Posts : 1768
   Posted 2/26/2010 11:20 AM (GMT -7)   
It is possible to go back to normal. The endocrinologist said that within 4 years I could go back to normal. I don't have genetics on my side though...my mom has mild osteoporosis, as did my grandmother on my dad's side, so I do worry about it.

My GI is very conservative with steroids because I am young and already have signs that they have lowered my bone density. She tries everything else before prednisone. I was diagnosed at 19 and my prior GI's were not as conservative with meds, which is probably why my bone density is not what it should be.

You have to think about it all in context though. If he didn't ever go on steroids when needed, he'd likely have other problems like malnutrition, and surgery...so just think of it all, not just the one thing. Osteopenia just means your bone density is lower, not that it's really bad. It's not as bad as it sounds. I freaked out when I found out about it, but once I went to the endocrinologist, I was much less stressed.

Has his GI suggested him seeing an endocrinologist? That might help put things into perspective about things. They also can do tests to make sure he isn't losing vitamin D and tell you all the things that would help. He can also better explain the numbers...i know that +1 or -1 is technically within a normal curve, but below that is when it's abnormal. This probably doesn't explain it well, but there's a normal number, and a normal variant below or above that based on age, sex, and other factors. So basically, -1.1 means you're .1 out of the low end of normal...make sense?

Wouldn't it be nice if we all had the energy to just exercise? It would be great, because exercise is really good for maintaining bone density, but not all of us have endless energy :(

I hope that helps some. Try not to get too stressed!
Becky

32 yr old female-dx with Crohn's in '97 after emergency resection and appendectomy, 2nd resection '05, Bilateral pulmonary emboli 10/09
Currently on Humira, Omeprazole, Effexor, Seroquel, Calcium, Vit D, Coumadin


want_2_be_well
Regular Member


Date Joined Sep 2006
Total Posts : 181
   Posted 2/26/2010 3:46 PM (GMT -7)   
I too have Osteopenia at 35 from the steriod use.  I believe they discovered it at 33, I get bone density scans yearly now, exercise, and take calicum with vitamin D and have seen improvement.  The key is to stay off the steriods if possible. 
 
My Dr.  suggested trying the excercise and calicum before going on anything like boniva.  I improved enough year to year that there was no need for stonger treatment.
 
Good luck!
want_2_be_well
33 year old Female
Diagnosed with CD 2006, had suffered long before 2006.
CD Meds: Remicade every 7 weeks & Imuran 50 mg,
Also have seasonal allergies, milk allergy, and asthma.
  
 


sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 2/26/2010 3:58 PM (GMT -7)   
I was actually dx with osteoporosis a year ago. I've been taking a drug called Forteo which is superior to the bisphosphonates for building bone. The bisphosphonates stop further bone loss, so your husband should probably be taking one of these meds (Reclast is IV so there are no GI issues and it's only once a year)... Since I was already at osteoporosis scores, I was approved for Forteo for 2 years then back to the Reclast. I am steroid dependent, so using rectal steroids while on the Forteo. I cannot stop steroid use altogether or I'll end up back in the hospital. So...

No fun. But, be comforted that his scores really aren't that low and there are ways he can build bone, stop further loss, etc. In many ways he's better off just having this knowledge. many people are at risk for fractures as they age... At least he is in charge now and doing things to prevent fractures.

Just taking a bisphosphonate med will lower his risk of fracture... (Reclast is one, Fosomax another, Boniva another...)
1 fistula, crohn's colitis, limited to large intestine
Compounded budesonide 3mg/daily, Cimzia, MTX . Dx Osteoporosis 10/08 started Forteo 1/27/09


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 2/26/2010 5:57 PM (GMT -7)   
I lost more than a full point in less then 2 years worth of time due to being on 80 mg of pred. I used fosamax once weekly for six months and improved back by a .5.
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

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Ouch101
Regular Member


Date Joined Dec 2009
Total Posts : 37
   Posted 2/26/2010 7:38 PM (GMT -7)   
I was diagnosed w/Osteopenia when I was 28---2 yrs ago. my Vit level was 12. Since then I've been on 2000Iu daily Vit D, and supposed to be on 1000calcium...and I take magnesium which is ALSO needed to absorb calcium. Vit D needs to be with magnesium to absorb Calcium together...but not sure how much of the magnesium you'r supposed to take. I had another bone density scan 6 months ago--the score of my spine improved and am no longer osteopenia in that area..but in my hips it went down two points...so now there's osteopenia there.... Which is a weird result, but whatever. All I know is that it's probably due to not taking very much calcium cuz it was making my constipation and stomach pain worse.... But now that I have mirilax... I NEED to get back on it, obviously.



More important than knowing the bone density scan results, at least so I think, would be his levels of VitD, Magnesium, Calcium, and then working w/his doctor to increase those scores w/proper amount of supplements. AND resistance exercise for the muscle to pull on the bones--which builds more. My doc recommended even just something as simple as walking w/light weights in my hands on my walks w/my husband.

Good luck!
2,000 Vit D3 daily, 500 calcium... fibromyalgia, osteopenia, supra ventricular tachi cardia, low iron, low B12, gluten intolerant, .... colonoscopy scheduled for March


seconder
Veteran Member


Date Joined Jun 2008
Total Posts : 610
   Posted 2/26/2010 7:56 PM (GMT -7)   
I was diagnosed with osteopenia a few years ago by a doctor I don't see anymore.  He was concerned about making sure I take calcium and vitamin D.  My new doctor is a lot less concerned, and I'm following his lead.
 
The New York Times published an article in September that calls into question the diagnosis entirely.  The diagnosis of osteopenia is new and -- I didn't know this -- controversial.  Apparently, as one ages, bones become less dense.  That's just the way it is. . . .
 
 
NYTimes said...
Indeed, it was a W.H.O. panel financed by the pharmaceutical industry that in 1994 defined normal bone mass as that of an average 30-year-old woman. Because bone naturally deteriorates with age, anyone much older than 30 is likely to qualify for a diagnosis of osteopenia; using similar logic, a middle-aged woman might be said to have a skin disorder because she had more wrinkles than her 30-year-old daughter.

debilitated
Regular Member


Date Joined Jan 2010
Total Posts : 448
   Posted 2/26/2010 9:38 PM (GMT -7)   
22. M and osteoporosis worse than a post menopause women.
Yes i got it bad. -4.0 right hip
-2.0 Left hip
-3 in the spine

That was last year. Could be a lot better.

PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 2/28/2010 5:13 PM (GMT -7)   
He just finished a 3.5 month course of steroids. Hopefully he'll be able to stay off the steroids for a while. However, every 8 weeks, he gets steroids along with his remicade infusion - we can't do anything about that! So, I guess we'll just have to deal with that. But hopefully the doc will tell us what to do with his vitamin supplementation and he's already been exercising, so hopefully his bones will get denser in the next year, if he can stay away from taking steroids continuously.

Even the reclast IV seems scary - with the risk of necrosis. I know it probably won't happen to him, but still, I worry. I'll let you guys know what the doc recommends when he gets around to it next week.

I have this image of my husband in a wheelchair in my head that I can't get rid of. :-/ I know it sounds terrible. I'm working on getting rid of that image. I know he is no different than the day before we got this news - knowing is almost always better - and I know this. At least this way we can track it, and now there are meds that can help . . . I know all this, but it is still taking me a while to reconcile my strong husband with having not so strong bones. I'll get there.

Thanks all for your kind words and your advice. I'll post back when I hear something from the doc. Which of the meds is easiest with the fewest side effects?

Thanks for your help.
PV

80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 2/28/2010 5:34 PM (GMT -7)   
I'm 28 and have osteopenia because of the steroids. It's honestly not high on my list of concerns. That's maybe stupid of me, but I've got much bigger fish to fry with this disease. I take Vitamin D and Calcium, and that's about all I can do for now. I get as much exercise as i can, and honestly, I'm just a lot more worried about my Crohn's.
28 Year old Female
Diagnosed with Crohn's Colitis March 2000
Recent possible diagnosis of IBS-D
 
Tried Meds: Asacol, Remicade, 6mp, Humira, Xifaxan, Apriso, Rowasa Enemas, VSL #3 DS.
 
Currently on: 25mg Prednisone (Tapering SLOWLY from 60), 125mg Imuran, Psyllium Seed Powder, Colocort Enemas, Prenatal Vitamin, Vitamin B 12 Complex, Vitamin D/Calcium, Align Probiotic, Vesicare (for urinary retention). 


CrazyHarry
Veteran Member


Date Joined Mar 2006
Total Posts : 1034
   Posted 2/28/2010 11:01 PM (GMT -7)   
dont use fosamax or boniva or any of those bone building drugs. they cause more harm than good. they transform osteoblasts into osteoclasts (or maybe it is the other way around) so essentially what you are doing is tricking the bone scan test into showing that you have increased bone density. but you really havent. this "new" bone is actually more brittle so you are causing long term problems and possible fractures.

get off or reduce the steroid meds. take at least 1500 mg/d (spread out) of elemental calcium (must have at least this much of ELEMENTAL calcium). take it with magnesium and vitamin D. the vitamin D is a must as studies show the body absorbs like 10% of calcium but when taken with vitamin D it absorbs like 80-90%. and take all of this with some fat, like your omega 3 supplement or a tablespoon of coconut oil as you need fat to absorb and use vitamin D and calcium.

note that whichever route you choose, it will take a few years to get back to normal, depending of course of how bad it was when the osteopenia was caught.

other good food sources of calcium besides milk include leafy greens.

exercise is good too - muscle growth promotes bone growth.
Crazy Harry

---------------------------------------------
Crohn's since 1993 (17 yrs old then)
surgery in July '05 - removal of 2 inches at ileum and 8 inches of sigmoid colon (had fistula into bladder)
Nov '05 developed colonic inertia; July '06 told i needed ostomy surgery
began maker's diet in August '06 - now feeling the best ever with no symptoms of colonic inertia and i kept my colon
med free as of 10/31/07


misspriss82
Regular Member


Date Joined Mar 2008
Total Posts : 221
   Posted 3/1/2010 7:35 AM (GMT -7)   
hey! I am 28 years old and I just found out I have osteopenia as well!  I just switched to a different dr and he was concerned I had been on steroids over and over again (SO glad I got a second opinion b/c I would have never realized!).  Anywho, my hip area is way low, so they started me on 2000units of Vitamin D daily as well as 1500 of Calcium.  I am to stay on this for a year and then they are going to re-evaluate. 
 
  I plan on getting some weights and walking/working out with them to help give me more strength. 
 
  I hate that all of us on here seem to have this in some form, but its actually comforting to know I'm not alone! I hate feeling like I'm 80 years old!!
27y/o, diagnosed with Crohn's Disease at 25 y/o
Asacol 400mg 3 pills 3x daily
Starting on Remicade soon..... and I don't really know anything about it!

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