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megger
Regular Member


Date Joined Oct 2008
Total Posts : 62
   Posted 1/21/2009 3:21 PM (GMT -6)   
I have pancolitis and am currently taking Asacol (3 tablets - 4 times a day). Have been taking it since I was diagnosed in Oct 08.
 
I took pred when I was first diagnosed and that amlost immediately took I'd say 95% of my symptoms away (20+ D bm's a day to 3-5 solidish bm's a day, lots of blood and mucus to very little blood and no mucus, excruciating cramping pain to no cramping pain at all, very urgent to no urgency...)   
 
Since I tapered off pred in November 08 I have been slowly getting worse again. I have never been able to get rid of the blood in my stool - but now i have more urgency, some cramping everytime I eat, sore colon pain, loose mucusy bm's with blood... My bloodwork came back great a couple of weeks ago, but my symptoms seem to be getting worse.
 
I am in the midst of a referral to a GI - I only have a Gerneral Surgeon for a specialist right now. I'd like to try changing my meds befoer my flare gets worse and I have to go on pred again... I DO NOT want to do that...
 
Any suggestions for what types of 5 ASA drugs might work differently for me other then Asacol?? I thought Pentasa might be worth a shot - but I heard it is released farther up into the terminal illeum (which I don't need). Then I though Mezevant might be worth a try too (Canada's version of Liada), but I don't know enough about it....
 
Can anyone relate??
Meghan
 
23 years old
Moderate-Severe Pancolitis
Diagnosed October 2008
12 Asacol (3 pills 4 times a day)
Entocort enemas nightly since Dec 2008
Daily Multi-Vitamins
Daily Fibre intake - 1 tbsp Metamucil
Protec Probiotics - I pill at bedtime


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 1/21/2009 5:58 PM (GMT -6)   
Sounds like you tapered off prednisone too soon?
Otherwise, I've only used Asacol, for maintenance. I need prednisone and Rowasa enemas to tackle flares.
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering.
Asacol/5ASA 6x400 mg maintenance for 20+ years; use prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed wheat/gluten, other intolerances; started diet without gluten, soy, dairy, tomato etc. Replete$$ probiotic powder, then Forte, now a stronger one (50 billion). Doing much better, but still having some bad days. 


Shadam
Regular Member


Date Joined Jan 2009
Total Posts : 307
   Posted 1/21/2009 6:10 PM (GMT -6)   
Hey Megger,

It seems like you and I had almost the same issue at the same time...I was DX late Nov and was put on 30mg of Pred and Asacol (2 pills 3 times a day). While on the Pred, I felt great (almost normal), only had 1 bm a day which was solid. As soon as I got off the Pred, my symptoms started coming back again which scared the living hell out of me. I called my GI and he told me to get back on Pred and kind of shyed away to see if the symptoms would go away themselves...luckily enough they did (keeping fingers crossed). I still currently have semi lose stolls but only go 1-2 times a day with very very limited urgency.

I guess what it boild down to, is how much Pred were you on? From my understanding if people arent on enough Pred, the inflamation wont go away at all...
Age: 25 / Male / Florida
Diagnosed: 11/08
Currently on Asacol 2 x 3 day (waiting for results)
Prednisone / ended 1/09 (started at 30mgs and tapered down)
Started taking chamomile tea and multi vitamins (waiting for results)


megger
Regular Member


Date Joined Oct 2008
Total Posts : 62
   Posted 1/21/2009 7:10 PM (GMT -6)   
I started on 40 mg pred for one week, 30 mg the next week, 20 mg the week after that, then 10 mg for 2 weeks and finally 5 mg for the last week. 5 weeks total. I had such a good pred experience, and I felt great during and after - but I have heard horror stories about taking pred the 2nd time, plus I just don't care for what pred does to your body...

The more I read about it I think I am going to try Pentasa. It does not have the eneric coating that Asacol has, and I'm thinking that I may not be absorbing all of the medicine into my system... I will talk to my Dr. about it...
Meghan
 
23 years old
Moderate-Severe Pancolitis
Diagnosed October 2008
12 Asacol (3 pills 4 times a day)
Entocort enemas nightly since Dec 2008
Daily Multi-Vitamins
Daily Fibre intake - 1 tbsp Metamucil
Protec Probiotics - I pill at bedtime


RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 1/21/2009 8:35 PM (GMT -6)   
I agree with the prednisone...it is a very scary medication, but it also is very helpful. With all my experience with prednisone I also agree that you may have tapered too fast. Though prednisone has many horrible side effects it's also sometimes worth it b/c it does take help with the flare.

I so wish you the best of the luck!

: ) Robin
Dx-May 2007  Asacol-2400mg bid  Prednisone-20mg  Remicade-5 Tx
Paxil-40mg  Prilosec-bid  Multivitamin  Moderate/Severe Pancolitis
28 year old Mommy of a 1 year old and a Wife for almost 2 years!
Life has never been so sweet!  I appreciate the small things in life...the little joys that occur every second of every day.  Though we struggle and have crazy complications, nothing can over ride our love and happiness.
Surgery is scheduled for February 6th!!!  : )   Yea!!!!!!!!!!


JM21204
Regular Member


Date Joined Dec 2008
Total Posts : 254
   Posted 1/21/2009 8:49 PM (GMT -6)   
I think you tapered too fast. As much as I hate it, it has always cleared up my flares completely for at least 3-4 months afterwards. I usually stay on 40 on average a few weeks and never taper below 40 until all blood and mucus have been gone for a good 4-5 days.
33 yr old female
Diagnosed with Pancolitis in 1/2007
Baby due 3/2009
Meds:1600 mg Asacol a day, Ferrex, Pre-Natal Vitamins, Lovenox, on and off Prednisone (40 mg then taper)
 


uran
New Member


Date Joined Jan 2009
Total Posts : 7
   Posted 1/22/2009 2:56 AM (GMT -6)   
You should really give Pentasa a shot. I have proctosigmoiditis, and Pentasa did help my condition in 2 weeks. Unfortunately I can't take it anymore 'cause it gave me severe hearthburn/stomach pain, but it really helped with my UC!
25 yr old female biology student, diagnosed with proctosigmoiditis in December 2008
Meds: Pentasa suppositories, 3x2 Pentasa, 75 mg Imuran, Salofalk enema, Xanax and Citalopram for anxiety
Supplements: Flaxseed oil capsules x 2, Vitamin U, Probiotics x 2

Post Edited (uran) : 1/22/2009 2:12:17 AM (GMT-7)

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