Steriods havent worked - i'm at a complete loss - pls help!!!!

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Debly
New Member


Date Joined Dec 2008
Total Posts : 8
   Posted 5/12/2009 8:29 AM (GMT -6)   
Hi everyone,
 
Well i've been diagnosed with UC for over 2 yrs now. Unfortunately i have pan-colitis. The dr started me on Asacol x 3 per day but that didnt do anything to alleviate my symptoms. about 12 weeks ago the decision was made to put me on Steriods. I began a tapered course of Prednisolone, starting at 40mg for 4 weeks and tapering down. I have one more week at 5mg left. However, although i had the first solid stools, it only lasted a few days and then went back to my usual diarrhea.

I have just been for a follow up colonoscopy yesterday and the GI confirmed that my colon is still red and inflamed. Basically i have had a very poor response to steriods. I was under the impression that they mostly did a pretty good job in getting people into remission.
 
So now, we is suggesting i try a foam enema. Although i dont believe that will work as i have pan colitis and from what i've read it only works for the lower parts of the colon. If that fails, which no doubt it will, then he wants to put me on Azathiopine, which is an immunosuppresant. But i cannot see why that would work if the steriods havent worked??

Has anyone been in a similar position - having tried steriods and not worked, and then gone onto Azathiopine?
 
After that, he has said that we will have to begin to consider surgery. Although i have pan colitis he said the grade of my condition (from looking at the colonoscopy) is a grade 1. Grade 1 being the least worst and Grade 5 being the worst. Also, i am not aneamic or loosing any blood or seem to be loosing any protiens yet, so surgey would seem a little drastic at this point.
 
I'm fed up and frustrated and was hoping maybe some of you may have advice from being in a similar position?
 
Thanking you in advance
 
Delby

Zippy123
Veteran Member


Date Joined Feb 2009
Total Posts : 735
   Posted 5/12/2009 8:50 AM (GMT -6)   
Only other path is natural cures, which is basically what I have to do mostly since the colitis drugs hardly work for me and I get bad side effects from them at full dosage.

If you are desperate here is something to try, as I think it is part of what is keeping me in check for now, but I can't say for sure.

I sound like a Boswellia salesman, but try taking a minimum of 300MG of Boswellia 3x a day (Natures Way brand, maybe Source Naturals) for inflammation, and find a good quality high dose probiotic, and watch what you eat like a hawk. Search this board for tips, Sunflower seeds and (carrots or spinach) is a popular food to try. It takes time for natural cures to show an effect, maybe a month, it depends.
Try to reduce your stress and anxiety.

May or may not help you, but you have nothing to lose if the drugs are either not working or making you worse unawares.

Rio in Maryland
Veteran Member


Date Joined Nov 2007
Total Posts : 891
   Posted 5/12/2009 9:03 AM (GMT -6)   
Often when steroids don't work azathioprione is seen as one of the next options; so what your doctor is recommending is not out of the ordinary.

However, I don't understand why doctors don't give more info on how to taper off prednisone. If your D comes back then it helps to stop tapering and instead increase your dosage, and then taper down at a slower rate. Instead they often only tell you to taper down. If you're going to use such a strong drug then better guidance is called for, or you need to ask more questions and read up on your options too.

Steroid foam may be worth a try. You could even try using the foam twice a day to try and get things under control asap. Also, if you decide to take azathioprine, it can take a coupe of months to kick in, so the steroid enema might help reduce the severity of symptoms till then. Hope you're better soon.
Rio, 33 year old male. Diagnosed with UC in 2006
100 mg Azathioprine (stopped), 4800 mg Asacol
VSL#3 x 3 times a day, Metamucil wafers
Vitamin E enema or Asacol enema occasionally
Spinach & sunflower seed diet / Juicing spinach and carrots


fargman
Regular Member


Date Joined Dec 2008
Total Posts : 74
   Posted 5/12/2009 9:35 AM (GMT -6)   
What you have described has worked for me. I have had flares where the prednisone alone does not work. Then I went on Imuran and was able to get rid of the flare. It takes a while (3 months for me) for the Imuran to kick in though, so you have to be patient. The goal is to get off the prednisone as soon as you can.
Diagnosed '93. 
 
Asacol, Prednisone, Remicade, Imuran
 


fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 5/12/2009 10:38 AM (GMT -6)   
I think you have a few options before trying azathriopine.

First, have you been using ANY rectal meds? I started off just on Asacol (12 pills/day split over 3 doses), but a week later my doctor added Rowasa enemas. Even though I have pancolitis, they helped a lot as the Asacol doesn't necessarily make it all the way to the rectum, and if that's not healed, you can still be having really bad symptoms. Don't think that rectal meds won't work just because they don't reach that far into the colon...studies have shown that they are much more effective at healing inflammation than oral meds are. With Asacol and Rowasa, I was getting to remission, but then I got a tummy bug that really set me back. So, I did pred (a quick course by traditional standards) and it worked well for me.

Second, I think you could try a higher starting dose of pred (60mg) and then do a slower taper. Sometimes it takes that high of a starting dose to get rid of the inflammation.

There is a good chance the azathriopine will work even though the prednisone didn't.

Also, I would definitely talk to your doctor about Remicade before talking about surgery.
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Eased for ~3 weeks in December, possibly b/c of probiotic use?
Returned in January 2009 (with a vengeance), diagnosed with pancolitis on January 30.
Currently taking Asacol (400mg 4 pills 3x daily), Rowasa nightly, Culturelle probiotic, and Zoloft (25 mg).


qwerty1
Regular Member


Date Joined Feb 2009
Total Posts : 402
   Posted 5/12/2009 10:52 AM (GMT -6)   
I don't have any advice but I have just been put on Azathioprine as of yesterday because my symptoms began coming back after I dropped below 20mg of Prednisolone. They then returned in full swing once I came completely off after 5mg. I was happy to give it a go, even though the side effects can be pretty nasty from what the IBD nurse explained to me. I want to try anything to try to get this sorted.

22 year old female, from the UK.
 
Diagnosed with Ulcerative Proctitis Jan '08, Proctosigmoiditis Jan '09.
Hospitalised Jan '09 for 3 days IV Hydrocortisone - had no effect!
Hospitalised Feb '09 for 7 days (5 days - IV Hydrocortisone)
  
Currently taking daily: 
40mg Prednisolone tablets
100mg Azathioprine
1g Acetarsol suppository every other night (Previously taking 5mg Pred suppository)
1g Mesalazine granules x 2
 
7.5mg Zopiclone (taken when needed for sleeping)
10mg Citalopram (anti-anxiety/depression)
Probiotic Multivitamins 
                             
                             


hana24
Regular Member


Date Joined Dec 2007
Total Posts : 354
   Posted 5/12/2009 11:23 AM (GMT -6)   
It can take a few months for the Azathioprine to kick in so don't get discouraged if it doesn't work right away.
Jessica 27/F
Remicade
Apriso/4 pills
Citalopram 20 MG
Align


AnnaG
Regular Member


Date Joined Apr 2008
Total Posts : 191
   Posted 5/12/2009 11:47 AM (GMT -6)   
I had IV steriods,pred tapers starting at 60mg cortizone enama,steriod pred foam,none of it made any difference,for me but Azathioprine has worked quite well for me I've been on it nearly two years now,and improvement,has been very slow,I really did'nt notice much improvement for the first six months,and strangely it seems to still be improving fingers crossed I'm getting nearly back to normal now,but it has been very frustrating and my GI has been talking surgery for a while,so my if you do decide on imuran don't give up hope to quick the process on dampening down the immune system and calming an infammed irritated colon seems incredibly slow.

mbx5
Regular Member


Date Joined Sep 2007
Total Posts : 365
   Posted 5/12/2009 12:59 PM (GMT -6)   
I just started Imuran (Azathioprine) and am hoping it works out for me as well. I am currently steroid dependent.
Stats:35 yr old male. UC for 15 years.
location:North Western PA
DX: Started left-sided UC, most recent scope shows pancolitis
Medications:20mg pred (as of 4/27/09), 12x pills Asacol per day, 100mg Imuran per day, 1mg Atavan per day (anxiety) when needed, 20mg paxil per day, Super-omega fish oil pills - 1x per day, Flax oil pills - 1x am, 1x pm, Culturelle probiotics - 2x am, 1x pm, Vitamin B-12 injections weekly.
Surgeries: Recent Endonasal brain surgery to remove non-cancerous hormone producing tumor on pituitary gland (and I am still more afraid of my UC!!)

"I poop in the woods because I can"

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