entercort n my other issues

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Regular Member

Date Joined Nov 2008
Total Posts : 28
   Posted 7/18/2009 8:18 PM (GMT -6)   
i now i didn't spell that right and my siggy med list isn't probably right but i am on 1 ml metotrexite (SP) every week and 3 entercort daily.  Everytime i try to taper the entercort i flair.  I can't get it under control.  I have tried asacol, the meds that go up your rear, 6mp. Nothing seems to work for me.
But i was wondering what this entercort is going to do to me long term.  I used to know the reasons not to use steroids long term but can't remember now.
I have fiber but it gives me terable pain from gas.  I am at a loss.  GI doesn't want to try me on the biological drugs because he says the long term use for someone my age (25) is unknown.  And there isn't anyone that does the surgery i would want in our area.
I and good enough to function, i work, play on the lake but i still have 10-15 bms a day and very painful gas pains.
6mpdidn't work for me cause terable belly pain
3 asacol x2 day
dx in 2004 took a year to figure out.  Never lived in complete remission but good enough to work.

Regular Member

Date Joined Dec 2006
Total Posts : 251
   Posted 7/19/2009 3:16 AM (GMT -6)   
I am sorry to hear about your pain. 10 to 15 BMs a day is ridiculous with the amount of medicine you are taking. How far out of town would it be for you to see a surgent and just get it done? You are so young. If not I see you take 3 Asocal 2 per day. When it worked for me I had to take it 4 pills 3 times a day consistently. I would talk to your doc about upping your dose. Hope this helps good luck.

Female, Left-sided colitis diagnosed at age 28 in 2001
Remicade stopped a major flare for me I am now off all meds except the remicade.

Elite Member

Date Joined Mar 2003
Total Posts : 10407
   Posted 7/19/2009 9:20 AM (GMT -6)   
There are a lot of choices here. Your Asacol dose is low and could be increased. Other 5-ASA's are available, as well as Sulfasalazine. The immunosuppressants (Azathioprine, 6-MP) have helped a lot of people.

In regard to Remicade and other biologicals, you can weigh the risk of possible future problems against your quality of life. Bear in mind that Remi has been in use for more than a decade now, so there is considerable information available.

Entocort, like other steroid drugs, should be limited to short-term use only. The suggestion that it isn't systemically absorbed is a myth for many of us, and we have the life-long damage to prove it. I got a very painful, progressive condition called avascular necrosis (or osteonecrosis) after taking the "safe" Entocort for an extended period. I've had two shoulder surgeries and may yet need a third, and still have pain and limited movement in the shoulder.

Your GI sounds very conservative to me. UC is an unpredictable disease that can easily get out of hand if not adequately treated, and therefore you deserve more aggressive treatment choices.

At the very least, I'd suggest a second opinion from another GI. It may also be worth a quick trip to a city to get a consult with a surgeon.
Ulcerative colitis forum co-moderator
Moderate to severe left-sided UC diagnosed 2001.
Flared for 5 years, finally in remission with Remicade since March 2006.
Avascular necrosis in both shoulders is my "forever" gift from steroids.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. 
"My life is an ongoing medical adventure"

Veteran Member

Date Joined Feb 2009
Total Posts : 7150
   Posted 7/20/2009 12:11 AM (GMT -6)   
I'd ask your doctor about increasing your Asacol dose, switching to another 5-ASA, or about Remicade. Hope you get better soon.
Status: Remission since late May 2009!
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Diagnosed with pancolitis on 1/30/09
Currently taking Apriso (4 pills ONCE!! daily), Rowasa twice weekly, Natural Factors Ultimate probiotic 12/12 Formula, and Zoloft (25 mg).

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