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Question for PV or anyone else who could answer this?

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Crohn's Disease
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Posted 10/5/2010 3:00 PM (GMT 0)
I have been on Remi now for about 1 year, dosage moved from 8 weeks to 6 weeks. But, I am flaring and I cannot get off Prednisone at all. Every time I drop the dosage to about 5 mg, I start to flare.

PV, I was wondering if you are still on Prednisone and if you were able to ever go without Pred for more than week, which I haven't been able to do at all?

Thanks
Posted 10/5/2010 4:10 PM (GMT 0)
I was in the same shoes as you - still am. I have been on pred for about 20 years. I know you don't want to hear that. I wouldn't try to taper until you are more stable. The only times I have been able to get off pred and stay off were when I made drastic changes in my diet. I don't know if that's an option for you since food is a touchy subject with all of us anyway. Maybe you're not tapering slowly enough. Can you get 1mg pills and taper 1mg at a time by weeks or even a month at a time? P.S. - all of this was while I was on remicade 10mg/kg every 6 weeks.
Posted 10/5/2010 4:42 PM (GMT 0)
stef17: thanks for your response, much appreciate. I see we joined around the same time, my active disease timeline is pretty much from middle of 2002, although I had a two-year remission in between (late 2003 to about middle of 2005). Remi since last year 5 mg/kg every 6 weeks.


Quick question: any long-terms effect of taking pred for 20 years, I am presently on Alderonate Sodium for bone loss, I also have elevated sugar levels and blood pressure. Are you facing long-term effects from being on pred for so long. Now I have been on pred for about 5 years and counting.

Thanks again for your response.
Posted 10/5/2010 5:58 PM (GMT 0)
Just fyi Iram, PV does not have Crohns Disease her spouse does.
Posted 10/5/2010 5:59 PM (GMT 0)
Thanks Nanners, I remember that, but failed to clarify.
Posted 10/5/2010 6:27 PM (GMT 0)
Iram - I have osteopenia from long term pred use, loss of muscle tone and elasticity in my skin. I was on bone builders for a year or two with much success, but had to stop taking them because I got pregnant. Have been having babies for the last 6+ years so I will start them again after last baby is born. I am in the process of weaning slowly in the hopes of coming off. Currently at 7.5mg/day, will hold for a month, then drop to 5mg, then maybe 4,3,2,1. I have my fingers crossed that I can get off this stuff once and for all. I am doing a very modified version of the SCD as far as food goes and that is helping a lot. No sugar or whole grains for me. :)
Posted 10/5/2010 7:47 PM (GMT 0)
Is the Remi helping at all?
Posted 10/5/2010 9:55 PM (GMT 0)
Hi Iram. My hubby did wean off the predinsone. He's actually not had problems thus far weaning off prednisone the last 2 times he had to take it. Because he took such a high dose for so long when he was in the hospital, he has osteopenia. But now for 7+ months he has been off prednisone completely, knock on wood (except for the prednisone he gets with every remicade infusion).

I was very worried about weaning off the pred, since he spent the better part of 2008 on steroids. The doc said that if he had trouble weaning off prednisone, they'd add another med to the mix like methotrexate, 6-mp or Imuran. He didn't want to do this, but in order to wean of the pred, the doc said that he would see if he could introduce another med, wean off pred, and see if he is stable, also withdraw the second immune suppressant, and see how he does. Have you given this strategy any consideration?

Hopefully you'll find a way soon.

PV
Posted 10/6/2010 2:30 AM (GMT 0)
Thank you everyone for your response. Now the remi is working in the sense that my flares are not as bad it used to be. Earlier if I get a flare it was emergency all the way, nothing, nothing could stop it, so at a minimum it was two-three days, drinking that darn barium so that they scan and get exposed to radiation. Then it was NPO, IV steriods, antibiotics, painkillers, and being prodded every hour by interns.

Now I flare, I can control with 20 to 30 mg of pred, I had dropped down to 5 mg and early in the summer I had dropped to 2.5mg, but now I am back to 20mg (see saw battle). I am able to control flare and keep food and water down basically because of the remi once every six weeks, doc wants to try humira, but I don't want to get off remi because once I am off, that is done, remi never again.

I am severely allergic to Imuran and other types of immuno-suppressants because of pancreatitis; MTX doc not willing to try it along with remi.


diet vegetarian, no meat, no poultry, seafood, no fried stuff, no candy, fries, no soda, basically rice, oats, small pieces of bread, crackers, milk yes, but with tea or coffee only. diet does not seem related to flares at all.
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