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Posted 3/13/2008 12:23 AM (GMT 0)
I see alot of information on suppliments, drugs being taken etc. but I don't see much about weight bearing exercise to ward off osteoperosis. If you're using prednisone you're at risk of loosing muscle mass as well as bone density. When I'm doing well I go to Jazzercise three times a week and on weekends I hike in the Sierra's.  I haven't gotton very good about lifting weights, but I'm trying to be better. 
Posted 3/13/2008 12:25 AM (GMT 0)
Excellent point, Rousel. Even if we're not on Prednisone, it can help prevent osteoporosis.
Posted 3/13/2008 1:53 AM (GMT 0)
what a coincidence to see this post..........I just headed back to the gym today. 1st time in 126 days (the computer was nice enough to inform me of this when I checked in at the gym) Was not doing well enough to hit the gym because I was afraid of having to run to the bathroom. But, now that I have been doing well, I figured it was time to head back.
Posted 3/13/2008 2:12 AM (GMT 0)
Time to time we discuss it, because I'm an avid exerciser doing weight-bearing and cardio on a regular basis...very important, I've read from a few different sources that CDers are prone to lose muscle mass particularly in the legs.

:)
Posted 3/13/2008 2:24 AM (GMT 0)

I am one of those who took pred but also engaged in regular weight bearing exercise.  In my case I walked and hiked about 25-30 miles per week.  This is what saved my bones.  After getting off of prednisone I had a bone scan and there was no damage.  I credit the exercise and calcium supplements.  If you have to take prednisone be sure to complement your treatment with supplements and exercise.  It can make a difference!

Sue

Posted 3/13/2008 7:31 PM (GMT 0)
good to hear, I have been taking 500mg of calcuim + vit D 3xday and fosomax 1xweek 70mg also back to the gym doing 3-5 days a week using the treadmill, elliptical and weight bearing exercises. I am nervous but hope for the best and want to do everything I can dto minimze the effects.
Posted 3/13/2008 7:37 PM (GMT 0)
I did two several month long stretches of pred. I go to sculpt class twice a week. Cardio on the off days. Anyway I think the weight lifting is really helpful to my overall well being.
Posted 3/13/2008 9:29 PM (GMT 0)
Serious weight training helped me restore my bone density from "osteopenia" range back to normal... without calcium supplements or osteoporosis drugs.
Posted 3/14/2008 10:35 PM (GMT 0)

Hi all,

I went into hospital today to see my GI specialist and was told my bones were thinner than normal due to me being on steroids since May 07.  I am now on 8.5 mg and am tapering 1 mg per week as each time I tapered before my symptoms came back but I was not prepared for this bad news.  I have left sided colitis and look after my elderly parents, dad is 89 and has has bowel cancer, um is 80 and has dementia.  The stress is the biggest thing for me

I go to the gym twice a week and do 45 minutes of cardio and 1 hour 15 minutes of machine weights.  I am told that furter steroid use is out of the question now and that I will have to try TACROLIMUS or get special funding to have remicade if I can get it under special circumstances laws ?.  I as unable to take Azathioprine nor 6 MP as I had awful side effects and went blind temporarily !.  I do not want to even try the tacrolimus and would ask for advice please.  The worst part is that, for the first time in 9 months, I feel quite well but the bone news has both deflated me and made me scared and despondent.  I am told I will be given strontium for the bone problem.

Any advice or words to help would be greatly appreciated.

Thanks so much in advance.

Jools.  Male 44 Bristol, UK

Left sided colitis diagnosed may 07

Prednisolone 8.5 mg

Asacol 8 daily

VSL#3 1 sachet daily

Vitamin B complex, vitamin E 400 IU , Zinc 15 mg twice daily, Vitamin C 1000 mg daily, Omega 3 fish oil 1000mg 2 pills 3 times a day and evening primrose oil 1000 mg 2 pills 3 times a day, Milk thistle 1 capsule daily, calcium plus Vit D 2 pills daily plus DHEA 100 mg daily in the last 2 weeks.

I have gained muscle well but was so shocked to hear about the bones.  It is a real kick in the pants as I thought I was doing well.

Posted 3/16/2008 4:41 AM (GMT 0)
Pardon my ignorance but thats why I'm asking.

I'm 26, been on pred for a few months now, whats my risk at this stage for having muscle loss and and bone density issues?
Posted 3/16/2008 5:28 AM (GMT 0)
Jools, Tacrolimus in the US can be prescribed only by certain physicians and under very limited circumstances. It has some very, very bad potential side effects. It is not approved by our food and drug administration, and my understanding is that it's used in Crohn's as a "last resort drug." Apparently it's more readily available in the UK. Here's a link to information about it:

http://www.nlm.nih.gov/medlineplus/druginfo/medmaster/a601117.html
Posted 3/16/2008 8:30 AM (GMT 0)
Sorry Judilyn, but I have to strongly disagree with you here! JOOLS--I have been on Tacrolimus (Prograf) for about 1 year now with few or NO side effects. My blood levels of the drug are very closely monitored, and the dosage used in UC and CD patients is MUCH less than in liver/kidney transplant patients for whom the drug was originally created. Tacrolimus is the ONLY drug that has worked for me. It is not a last resort drug in my case. My GI doc uses it before Remicade or Humira because it is an oral medication. As a vet student I greatly appreciate that small convenience!

I'm very happy that you can also get the drug covered by your insurance--I have not been as lucky and it is a very expensive medication. I would encourage you to give it a try, as long as you believe your doc is good at keeping track of your bloodwork and calling you if anything seems out of place! My doc has been wonderful to me here, and we've made small adjustments as necessary.

Please take a look at the paper summarized on this website--published in 2006 it specifically sites the SAFETY of Tacrolimus use in IBD patients. I could post many more, but doing a simple PubMed or Google Scholar search for "Tacrolimus and UC" is sufficient.

http://www.blackwell-synergy.com/doi/abs/10.1111/j.1572-0241.2006.00524.x
Posted 3/16/2008 9:02 AM (GMT 0)
I forgot to add the link to the FDA approved drug site. Judy, not sure where you heard Tacrolimus isn't approved, but it's been on the approved list since the mid-1990's.
Here's the FDA's Orange Book--it contains all of the currently approved drugs (prescription, OTC, and discontinued)
http://www.fda.gov/cder/ob/
Posted 3/16/2008 2:29 PM (GMT 0)
Thanks to you both for your information and care in replying. I am just loathe to try yet another immune suppressive drug because I had such terrible experiences with the azathioprine and 6 MP and, to be honest, I just feel something wrong about the whole immune suppressant thing. It does not sit right with me and the long term potential side effects are not really studied as yet.
Maybe I am a coward ?. I feel there is a common denominator with this disease that is being missed as it is a western disease so ergo it MUST have something to do with stress/western diet in my humble opinion. I am scared of the Tacrolimus and other immune suppressive drugs. I cannot imagine not being aboe to go into the sun again and would rather not be here than live like that.
I hope this is not bringing you guys down as that is not my intention at all, quite the opposite.
The worst part is that, for the first time since my symptoms occured, I was feeling better only to hear about my bone problem because of steroids but I hear that it can be reversed with exercise ?. I wonder sometimes if seeing the specialists is always a good thing ?.
Thanks again and sorry if I have upset anyone with my views.
Posted 3/17/2008 5:18 PM (GMT 0)
Jools--Please don't think there's anything wrong with declining to take immunosuppressive drugs. It was a decision I had to think long and hard about myself. And it isn't the perfect drug for everyone, I simply wanted to make sure that the correct information was being represented here in case others in our situation are also trying to make a decision about Tacrolimus for themselves. I completely agree that the researches must be missing something as there's been an increase in incidence/diagnosis over the years. Hopefully research will come to our aid soon, but until then, it truly is each persons' decision how to live with this disease. Good luck with everything!
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