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sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 10/16/2008 11:35 AM (GMT -7)   
Well, it's official.  My last DEXA showed a 9% decrease in density.  I am down from a -2.2 to an official dx of osteoporosis.  That's what my year of steroids got me.  cry mad
 
But, I've been doing alright holding on the rectal budesonide.  I just have to understand if I can continue those with the bone issue.  I am two weeks past the date I skipped my Tysabri infusion, so hoping I am succeeding in discontinuing that one.  Geez...  This DD owes us all a break!!!
--40 year old female, dx as UC in '04 (1st symptoms in '03), switched to Crohn's in '05, 1 fistula, crohn's colitis, limited to large intestine  --rejected (reaction/didn't work): Asacol, AZA, 6-MP, MTX, Remicade, Humira, prednisone
--Prochymal in Phase III study (can't wait til it's approved!)
--started Tysabri 3/21/08 STOPPED Tysabri 10/3/08,
--currently taking budesonide suppositories, 3mg at night.  Doing well with this so far.
--single mom to 11-yr-old girl


Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 10/16/2008 11:47 AM (GMT -7)   
about the only thing that seems to help bone loss is weight lifting or similar stress exercise. I saw some stuff about strontium supplements, but the jury is still out on that one.

Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 10/16/2008 12:15 PM (GMT -7)   
I just wanted to let you know what my Endocrinologist has me doing.  I take a prescription strength Vit D, 50,000 IU 1 X Wk, Plus 1200mg Calcium a day, and even though I had my tubes tied, she wanted me to take birth control pills to increase my hormone levels so that I could absorb more of the calcium.  Something must have worked because over the last few years, each time I have had a bone density test my levels have improved.  At this point, I am pretty low on my prednisone dose and she would be OK with me stopping the B/C pills.  I'm not sure I want to because I had pretty bad periods before and they have gotten things under control.  But, the point is that I couldn't take the Fosamax type products so we needed to find something else and this seemed to do the trick.  I do still get the occassional compression fracture, but my bone density has gotten better, and for a 43 year old thats pretty good.

Suzanne

CD 19 years offically, 29 unofficially. 3 resections '93, '95 '97
Symptoms constantly but all tests show only minor ulcerations. Currently having multiple episodes of gastritis with no known cause.


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 10/16/2008 3:24 PM (GMT -7)   
(((Shari)))

I'm on APD infusions for bone loss. Is there any chance you could have some infusions?]

I'm so sorry.

Ivy.
Co-Moderator Crohn's Forum.


yogaprof
Veteran Member


Date Joined Apr 2006
Total Posts : 1665
   Posted 10/16/2008 6:24 PM (GMT -7)   
I read about this websitein Oprah magazine. You can put in a bit of info about yourself and the scores from a bone scan and it gives your chance of a fracture. might be interesting for those of us who deal with bone loss. yp

http://www.shef.ac.uk/FRAX/
49 y/o woman.  Diagnosed 4/06 after colonscopy, SBFT, CT-scan all showed crohns. 3 months later, after pred and remicade, all tests showed no crohns. December '06 had adhesions cut through a laparoscopy. Now taking Glycolax, Ultra Fiber Plus, Florastor, and DHEA. Have become gluten-free diet per naturopath's tests.


sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 10/16/2008 7:03 PM (GMT -7)   
Thanks so much you guys... I guess I knew this day was coming but it's still not fun to hear. i've never really looked into any of the treatments, so I appreciate all your input! I will check each one out. I still need to set an appt with a doc. I am just switching Obs (liked my old one, but the drive was 1hr each way and 4 years of that was enough!) ... hoping the new ob would work for that. I haven't been on bcp for over a year now. But, I haven't had a period in about 5 years. I am going to get the new Ob to test for menopause, but I am only 40 and haven't noticed any of those symptoms (other than no period). Even if I am technically pre-menopause, I might need the hormones also.

What kind of doctor do you see for this?

Yogaprof - funny I saw that too but didn't explore it because... well, I wasn't there yet. I will go check it out now.

uggg....
--40 year old female, dx as UC in '04 (1st symptoms in '03), switched to Crohn's in '05, 1 fistula, crohn's colitis, limited to large intestine  --rejected (reaction/didn't work): Asacol, AZA, 6-MP, MTX, Remicade, Humira, prednisone
--Prochymal in Phase III study (can't wait til it's approved!)
--started Tysabri 3/21/08 STOPPED Tysabri 10/3/08,
--currently taking budesonide suppositories, 3mg at night.  Doing well with this so far.
--single mom to 11-yr-old girl


d2parrotperson
Regular Member


Date Joined Aug 2008
Total Posts : 320
   Posted 10/17/2008 10:01 AM (GMT -7)   
Obviously I can't take fosamax, and doubt I would if I could. I was on Evista for year though. It didn't bother the CD and I got good bone growth. I stopped taking it though, because I take enough stuff. I increased my calcium intake and will go it from here.
150mg Azathioprine, Lomotil, Iron, Nexium 2/day, Fentanyl patch, Oxycodone, Baclofin
Crohn's, Fibromyalgia, Several bulging discs, Bone spurs, Osteoarthritis, Osteopenia, Reflux, Stenosis, Strictures, Dengenerating facet joints
2 resections
 
Stephanie
When I am weak, then am I strong


Jenn4dex
Regular Member


Date Joined Mar 2006
Total Posts : 494
   Posted 10/30/2008 9:59 AM (GMT -7)   
I was in my mid thirties, when I found out I had osteoporosis, it's mostly from the crohns itself, plus a year of entocort and my mom has osteopenia.  I entered a clinical trial with UC Davis in CA and I have been taking daily shots of forteo for a year and mine has improved already 50%.
Jennifer
Diagnosed 1/06
CD of Terminal Ileum
Taking Pentasa, Prograf, adverse reactions to Remicade, Forteo Injections, Actonel, Calcium and Vitamin D, B12 injections.

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