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Bone loss?!

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Posted 7/3/2009 1:46 AM (GMT 0)
My GI decided to bone scan me on the off chance that 25 years of UC and at least a half dozen steroid sessions might have had a negative effect. Turns out I have advanced bone loss bordering on osteoporosis. Incredible, in that I am a 51 year old male who works out and runs 12 km almost every day. Falling apart.
Posted 7/3/2009 2:38 AM (GMT 0)
My mom got osteoperosis in her early to mid 40's due to being prednisone dependant. But the medicine she is on is helping her bone loss.
Posted 7/3/2009 3:41 AM (GMT 0)
Scary, only a half dozen times over 25 years? How long where your sessions?
Posted 7/3/2009 7:54 AM (GMT 0)
Mitzo...totally sucks to hear what pred has done to your body.....did the doc put you on a med to help rebuild the bone?

Are you also taking vitamin D?

quincy
Posted 7/3/2009 11:16 AM (GMT 0)
Thanks all. I was on pred 3 times, 10-week sessions each, including tapering, and on entocort 4 times, actually - I am surprised at the bone loss, but the doc says long-term inflammation also can contribute to it. I have low iron too, probably a result of poor absorption due to chronic D. So basically, the many years of UC/IBD are starting to take a toll. I am going on a bone-strengthening med in a few weeks.
Posted 7/3/2009 12:10 PM (GMT 0)

Mid-30s, male, athletic, runner, bone loss.  The uc and poor absorbtion can contribute to bone loss as can low testosterone (which can also be caused by chronic illness).  You might also have your testosterone checked, Mitzo.

Posted 7/3/2009 12:46 PM (GMT 0)
     I wouldn't worry so much.  You are only bordering on osteoporosis.  My last bone scan showed it to be -3.5 which is full blown osteoporosis.  I've had UC for almost eleven years and cannot count how many times I have been on prednisone.  On it right now too.  Been to a GI surgeon and he said I am not "bad" enough for removal of colon.  Last year I was hospitalized for ten days and was in a seven month flare and on prednisone the entire time.  I enjoyed a seven month full remission and started this flare around Memorial Day.  Be sure to take Calcium with vitamin D.
Posted 7/3/2009 12:46 PM (GMT 0)

Before you start a bone buildiing med please discuss the side effects with your doctor.  I know that if you take these meds you can't have dental surgery should you need it.  My mother's doctor (my mother is in her 80s) won't even prescribe these drugs anymore unless she feels her patients are significantly in need and that the risk of taking the drug outweighs the risk.  My brother, a dentist, advises patients against it.  Do your research!  Finjd out if strength training with weights could help reverse the damage.

Sue

Posted 7/3/2009 1:02 PM (GMT 0)
Seconder, thanks for the tip about testosterone - I have been wondering about that too. Have a urologist appointment coming up and will raise the topic.

You know, I would be OK with the low bone density and the low iron and all the rest if only this D was taken care of.

Posted 7/3/2009 2:33 PM (GMT 0)
Interesting info Sue.

Mitzo..have you had your vitamin D levels checked as well?

q
Posted 7/4/2009 1:58 PM (GMT 0)
I guess it would be good to have all levels checked. I know I have low iron. Absorption problems after years of IC, and especially these last 3 years of D, D, and more D. I also wonder if 7 years of Pentasa have helped contribute to this.
Posted 7/4/2009 2:08 PM (GMT 0)
I was on Alendronate for bone loss and developed a small area of bone loss in my lower jaw. Fortunately it was found early and the periodontist was able to scrape it, do a bone graft and save the two teeth in the vicinity. I went off the medication immediately.

Of course this doesn't happen to everyone, but we've all learned the hard way that it's better to be informed.
Posted 7/4/2009 2:12 PM (GMT 0)
I have read about that potential side effect of the bone strngtheners, and it is really something to watch for.

My little bone loss story can serve as a warning to those who have had long-term UC/D and/or taken corticostroids. IMO, if I can have bone loss, anyone can. I was not in any risk group.
Posted 7/4/2009 4:59 PM (GMT 0)
I know you don't want to hear this, but smoking can also cause bone loss. I know you have said it's the only thing that helps your UC though. Sorry to hear about your bone loss.

Why would the Pentasa contribute to the bone loss?

Posted 7/4/2009 6:49 PM (GMT 0)
I'm so sorry to hear you have to deal with this.

I am lucky that even after all these years of taking prednisone, my bone density still tests very good. I credit it to good genes and strength training (and maybe lots of Vitamin D from a love of the outdoors).
Posted 7/5/2009 12:52 PM (GMT 0)
I am suspicious about the Pentasa being implicated in the bone loss simply because I really have not been on steroid meds all that much over the years, nor have I been in a risk group in other ways. Taking mesalamine continuously for 7 years must have some effects over time - although googling about Pentasa does not reveal any side effects related to bone loss.
Posted 7/5/2009 3:31 PM (GMT 0)
Neither of my docs ever suspect bone loss from 5ASA, but I've not been on pentasa specifically...I've been on mesalamine for 20 years and it's never been a concern. I'm in the risk group.
I fell a few years ago injuring my shoulder..popped it out of the socket and spontaneously back in...not even a bruise..I was positive I broke my scapula or something else. nadda.

I've never been on pred, but do take a coritcosteroid inhaler for asthma (20 years at least).

I think you should consider getting your testosterone checked for sure as well as vitamin B12 and D.

I agree as well with the constant diarrhea. Have you been checked for h pylori or had an upper gastro scan done of your small intestine?

quincy
Posted 7/6/2009 12:17 AM (GMT 0)
Thanks - I am getting all my levels checked and there may be an endoscopy in my future too. My GI is finally sitting up, paying attention, and being a lot more empathetic now. A partial scope, distal only, the other day showed no inflammation at all at or beyond the zone it usually is, and he took biopsies. The endless D is a puzzle, and is likely the reason for my low iron, likely low vitamin D and calcium, and who knows what else. Gotta get it under control.
Posted 7/6/2009 2:01 PM (GMT 0)

Peety said...
I'm so sorry to hear you have to deal with this.

I am lucky that even after all these years of taking prednisone, my bone density still tests very good. I credit it to good genes and strength training (and maybe lots of Vitamin D from a love of the outdoors).

Another vote for vitamin D and weight training. These helped me rebuild my bone loss from osteopenia back to normal ranges.
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