Posted 12/17/2007 10:26 AM (GMT -7)
After all you've been through, I can understand why you don't want to get your hopes up. That was just awful that you fell on the ice, besides. Hope you have a great holiday with your family & best wishes for 2008! / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])
Posted 12/17/2007 8:47 PM (GMT -7)
Thanks Old Hat, One advantage of slipping on the ice is that for one day afterwards my BMs were half of what they were. I wouldn’t recommend this as a treatment, it last way to short and the pain just isn’t worth it. Lol.
Paul
Diagnosed in 2000 at age 43 with UC extending half way across transverse colon.
Allergic reaction to Asacol, Pentasa and Dipentum - can’t take any more 5ASAs.
Prednisone - worked well for 1 month, then side effects became unbearable.
6-MP - blood tests showed not metabolizing properly.
Corticosteroid enema, Flagyl, Ciprofloxin, VSL#3, Adacolumn Apheresis – no effect
Methotrexate with Remicade - 7 infusions with no improvement
Folic Acid and B12 injections.
Currently in Abatacept trial - waiting for remision
 

Posted 12/18/2007 4:04 PM (GMT -7)
Paul L said...
Thanks Severin and Scrap Girl,

Severin, I’m glad it is working for you but I’m not so optimistic. I have been through this before with the Adacolumn Apheresis trial a couple years ago. It was already approved in Japan and Europe with 80% success rate and yet it didn’t work for me. In fact the North American study was so poor that it probably won’t be approved here. I also heard good reports about the Adacolumn working for others. I find it hard to believe that I would have received the placebo in both the Adacolumn and Abatacept trials and also the other subject in the Abatacept trial here would have received the placebo as well. Even if it does work for most, no treatment works for a 100% of subjects. I may sound pessimistic but I am just preparing for the worst. I truly hope it works for me.



I've got to wonder Paul, if you are even considered a "normal" uc patient. You seem to not react well to any of the standard drugs used to keep UC at bay. That right there should indicate something. You don't react well to any 5-asa's, nor remicade, 6mp, flagyl, corticosteroids, and on and on. A typical normal uc patient would react well to some of those. And this would be world wide. People all over the world with uc benefit from these drugs and you do not. I wonder if you are misdiagnosed.

Furthermore, you have C-difficile. Certainly c difficile toxins and their affects on the colon don't respond to any UC meds. How much of your symptoms are UC and how much are from c difficile and can you tell the difference? Perhaps you have more pseudomembranous colitis than actual UC?

Post Edited (Horus) : 12/18/2007 4:07:05 PM (GMT-7)

Posted 12/18/2007 7:41 PM (GMT -7)
Horus, being misdiagnosed with UC is always a possibility. That is why I have had a second opinion. My current GI specializes in IBD only. Both GIs are certain I have UC. I had C difficile once from a round of antibiotics I took for another problem. It was cleared up and I was tested negative for it several times since. There was only a difference of a couple of BMs.

I had bad reactions that had nothing to do with UC, to 5ASA based medications. I was tested to see how well I metabolize 6MP and it was shown that it is not an option for me. The same test showed Imuran as well is not an option. This has nothing to do with UC. Corticosteroid enemas probably didn’t work because my UC extends further up my colon than it can reach. Flagyl is not really a mainline treatment for UC. Remicade is the only UC treatment that has not worked for me. Even my rheumatologist wanted me to take it for my arthritis and it didn’t work for that. The only medication that worked is prednisone. I was on it for about 6 months and it worked miracles for one month then the side effects became unbearable.
Paul
Diagnosed in 2000 at age 43 with UC extending half way across transverse colon.
Allergic reaction to Asacol, Pentasa and Dipentum - can’t take any more 5ASAs.
Prednisone - worked well for 1 month, then side effects became unbearable.
6-MP - blood tests showed not metabolizing properly.
Corticosteroid enema, Flagyl, Ciprofloxin, VSL#3, Adacolumn Apheresis – no effect
Methotrexate with Remicade - 7 infusions with no improvement
Folic Acid and B12 injections.
Currently in Abatacept trial - waiting for remision
 

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