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Osteoporosis and pred.

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Ulcerative Colitis
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Posted 12/30/2011 2:45 AM (GMT 0)
Just wondering who has osteoporosis from pred and how much you took over the course of your disease. Still having the rib pain and trying to figure out why. May just be my colon, but it is not fluctuating at all and only hurts in certain positions.
Posted 12/30/2011 3:07 AM (GMT 0)
How about ankylosing spondylitis for the rib pain? Or costochondritis (whenever I forget what that's called I remember that it has to do with my favorite big box store, LOL).
Posted 12/30/2011 4:15 AM (GMT 0)
Please get a bone scan. I turned out to have borderline osteoporosis in hips.
Posted 12/30/2011 5:36 AM (GMT 0)
Thanks, how much had pred had you taken?
Posted 12/30/2011 6:03 AM (GMT 0)
This is a huge concern for me, as my 13 yr old daughter has been on Prednisone more than she hasn't been on it these past 3 years. Hoping to get a bone scan soon.
Posted 12/30/2011 6:55 AM (GMT 0)
Allswell, i was on various courses starting at 40 mg. and going to 1 mg. It was the length of time i was on pred which was 14 months.
Posted 12/30/2011 7:09 AM (GMT 0)
I had a bone scan around the time I started pred (or a few months after starting) and it was normal but on the lower side. I would be curious to see what it's like now but I am willing to bet it's not great. I hope I am wrong. I never had rib pain though, mosly knee pain,
Posted 12/30/2011 12:31 PM (GMT 0)
I went on it for the first time Nov.2009 at 40mg for 3 weeks then tapered too fast, then I was on it again in June at 40mg for one week with a more gradual taper (new Dr.)? Then April 2011. In between I would use hydrocort suppositories and enemas. Before I ever had the pred I use hydrocort suppositories off and on for 3 years. End of August was in the hospital on IV steroids then tapered down from sixty. Went back on 10 mg to maintain till surgery, though I am flaring badly still it might be keeping it a little better. I may have forgotten one time in those 2 years.
Posted 12/30/2011 2:58 PM (GMT 0)
     I have full blown osteoporosis from prednisone.  I blame my former GI doctor for this.  Back in 1998 when first diagnosed and placed on prednisone (two months), I never took calcium.  I didn't know anything about prednisone depleting the body of calcium until I returned to my doctor for my second flare in 2000.  His nurse is the one who actually asked me if I took calcium.  I was past menopause too.  I had a bone scan and at that time had osteopenia.  From that time on, I did take calcium.  My family doctor recommended Fosamax which gave me terrible heart burn, so I ditched that...same thing with Actonel.

     For twelve long years I was off and on that darn prednisone.  Became prednisone dependent for two years prior to my operation in 2010.  My last bone scan read -3.7.  I also have three bone fractures in my back.  So beware!

Posted 12/30/2011 7:33 PM (GMT 0)
Thanks Christine, well I have only been off and on for two years so I,ll keep my fingers crossed, going for the operation soon so no more pred for me.
Posted 12/31/2011 6:16 AM (GMT 0)
I am a 37 yr old male and have osteoporosis from steroid use. I didn't use prednisone much over the course of my disease, but I did use steroids. I got the disease when I was 17 and I started with cort enemas for a couple of weeks, then I had a major flare and had IV steroids (100mg prednisone/day and then tapered down) for a couple of months. I had it through IV because I would vomit violently with the oral pred. After that I used entocort enemas, which are budesonide, for three weeks every couple of years. I didn't take pred again until a few years ago when I went to Australia for fecal transplant. When I told my GP (not my GI) that I was on pred she ordered a bone scan and it showed I had full blown osteoporosis.

So to sum it up I was on IV pred for a couple of months about 15 years ago and then orally for 8 weeks 3 years ago. I really don't think two courses of pred over 15 years is a lot of pred, but the dose was high so who knows. I contribute the osteoporosis to the budesonide enemas that I took quite regularly for several weeks at a time for 15 years. My GI claimed that they are not systemic and could not be the cause of the osteoporosis, but I highly doubt that.

I would suggest that anyone with UC that is prescribed any type of steroids request a bone scan from an Endocrinologist. You need to return to the same Endo for subsequent scans because they need to use the same machine and get you in exactly the same position to get an accurate reading for comparison.

So far the osteoporosis is not getting any worse so my Endo has not prescribed any meds. I am of course taking calcium and vit D, which I am not sure does much, but I take it religiously.

UC is rough.
Posted 12/31/2011 6:59 AM (GMT 0)
Robray, my doc told me oral budesonide wasn't absorbed systemically, too. It supposedly is released too far into the colon to have any systemic absorption. I was on it for about two years. I not only got osteoporosis, but osteonecrosis from it. I was taking Large doses of calcium as well as Fosamax while on the Entocort, but still developed problems.

I think maybe a steroid is a steroid is a steroid...
Posted 12/31/2011 8:47 AM (GMT 0)
Christine, you might want to try Bonita if Actonel and Fosamax give you heartburn.
Posted 12/31/2011 3:13 PM (GMT 0)
     Journey to health...do you mean Boniva?  My friend was on that and wound up being hospitalized after suffering a severe reaction.  Thanks for mentioning it, but I read up on all those osteoporosis meds and I believe the bad reactions outweigh the benefits.  They tell  you to take calcium with D along with the meds, so how do they know it isn't the calcium benefitting the body?  Maybe if I didn't suffer from dental problems I would, perhaps, give them a shot, but after suffering with UP for so long (12 yrs) and being on sooooo many different meds besides the prednisone, I think my body needs a rest from meds.

     For the past few months, I have had pain in my upper arms.  I went to an orthopedic doctor and he xrayed them.  The xrays didn't show anything.   He contemplated giving me a cortisone shot, but after reading that I had osteoporosis, he said if I could stand the pain it would be better to NOT receive the shot.  So, when the pain gets bad, I take one Alleve and that seems to help.

    

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