Posted 4/26/2010 9:27 AM (GMT -7)
Well, for me the Humira worked immediately-I mean literally after the first round of shots, I went from having 3-5 mushy BMs, all with visible blood (that was a vast improvement, but that is as much as the steroids did on their own) to going once a day, fully formed, no blood. It was AMAZING.
After I tapered off of the pred, I was only on the Humira and the Asacol (as well as the few supplements I was taking-milk thistle for liver health, multivitamin-I think that may have been it back then).
I stayed that way for the first year, basically. I ate what I wanted and such-but I had never dealt with IBS or anything, so it may be different because of that as well. Then I started seeing some streaks of blood after about 10 months. That was my only symptom, and we found that my internal hemmies were really flaring up (I had gone back to the gym and was doing a lot of strength training, so I think that is why). They prescribed me anucort suppositories, and within 2 uses, I was set into a minor flare-urgency, bleeding, 5-7 BMs a day. So they started me on the Canasa, and that got things back under control fine. But after that, I continued to have more bumps. Not food related for me, but changes in my exercise routine, or stress or illness would set me off and I would have to start back on the Canasa.
Then this past winter, things really started to deteriorate. I used the Canasa, but it wasn't doing the trick, then they moved me to weekly dosing and that didn't make a difference. They told me that within the confines of the trial, the only thing they could do was pred, and I had hoped to avoid that, so I opted to drop out of the trial and start Rowasa. But that ended up making matters worse, and before I could even GET the cortifoam that he wanted to try next, I wound up in the hospital. Unfortunately, both times I have had major flares, things have deteriorated so fast that I couldn't even wait to see if any of the meds would work. And I obviously tend to react differently to meds than other people-some really make me worse, and that is baffling to my docs.
I will say though-even when I was in a solid remission, there were days I would go 2 or 3 times. If I had been drinking alcohol, that would sometimes do it-sometimes I had no idea why, but then things would go back to "normal" without issue. And I always felt like anything between 1-3/day was normal, as long as there wasn't blood or the consistency of it was pretty much normal.
I really am glad you are feeling better. It doesn't sound like things are perfect, but definitely better! That is very good. I definitely don't think I am the norm-most people that I have heard from or talked to didn't have the immediate relief with Humira that I did. So I wouldn't be discouraged by that aspect. And the Remicade hasn't offered me immediate relief like the Humira did.
Anyway, I am really going on and on here!! I hope this was just an isolated occurrence this morning-I know how hard it is not to freak out at the first sign of trouble!! But hopefully everything will settle down, and you will keep having more of the once a day days!
Getting Closer to Remission!!!!
34 years old, stay at home mom of 2 girls, ages almost 5 and 3.5
Diagnosed in March 2007, symptoms started Dec. 2006
OUT of Humira trial-it stopped working
TAPERING pred (currently on 20mg), started REMICADE 2/26/10, otherwise taking Asacol (6/day), slow-fe iron (double dose), milk thistle, multivitamins, calcium, Ultimate Flora Critical Care, Vitamin C, and starting on 10,000 IU daily of Vit D, as well as GI Revive.