Need Serious Help

Alright guys I'm at a loss of what to do.

The last week to 2 weeks now I've had terrible symptoms and getting worse, just blood or bloody diarrhea about every hour or so almost like clockwork all day long. I have not changed my medicine at all, if anything I've even increased it (went to 20mg pred instead of 10mg, 3rd remicade infusion on Monday 10/19). It doesn't seem to get any better and I have no idea why it's 1) getting worse or 2) how to get it better. Any ideas?

Thanks,
M

Weird, I updated it not sure why it's not showing up.

imagardener2 said...
20 mg of pred will not stop a flare.
You need to talk to your GI if your current meds aren't working now.
Do some research and see what your GI will likely suggest (my guess=prednisone higher amount)
Sorry for your situation.

Problem is I started at 40mg of pred in like april, tapered down, bad symptoms came back (symptoms never fully disappeared and blood never stopped even at 40mg), then I jumped back to 10mg was okay, maybe 4-5 trips a day mostly substance, and then it came back full force which is when I jumped back to 20mg.

Can you retain the rowasa? If so you may want to try cort enemas instead.

I second what NSSG said - double the remicade dose. They should be able to push up your 4th infusion as well - maybe 4 weeks. Sometimes its needed to get things under control in the beginning. Are you responding the Remicade at all?

I'm the same way you are with steroids the dosage never really makes a difference. I get a boost for a few days and then things go back to where they were or hold steady but never heal me. But you may need to bump it up to get you to a manageable spot...thats what I HATE about prednisone.

Also have you been checked for c-diff? Remicade can bring that out...

I was just tested for CDiff last week because I suspected that as well. Negative.

You might want to do as others have suggested -- a higher dose or more frequent if you aren't seeing improvement at all. You should probably talk with your dr and tell him you aren't doing well. Hopefully the next infusion will start kicking in.

Have you tried any other biologics? Could be that remi just isn't the right one for you. Everyone seems to respond to meds differently. I hope you can find one that works soon so you can get some relief.

I agree with the retest for c. diff or other pathogens as they are notorious for false negatives

qsam6 said...
I agree with notsosicklygirl. I was on remicade and 40 to 60 MG a day and remicade made things worse. Surgery was my only option. Asacol worked for me for 3 years, but stopped working. Then I tried more meds than I can recall and most seem to work for awhile, but in the end nothing worked. Not saying nothing will work for you, but the one bit of advice I give is Don't Let The Meds Destroy You! The meds did a lot of damage such as atrophy of my adrenal glands. Now I am on life long prednisone. When I get sick or have pouchitis I have to increase prednisone to avoid an adrenal crisis. Prednisone weakened my tissue so much that I required 3 surgeries instead of 1 or 2 for J-pouch. If I had surgery sooner I wouldn't be on meds at all. I have to get monthly injections of testosterone because my body no longer produces any. I fought a long hard battle trying to save my colon but ended up damaging other organs in the process that resulted in more surgery.

wow, thanks for sharing your story. It makes me feel thankful that I had surgery when I did. I had to have 3 step as well but at least I hadn't taken that much prednisone that it damaged me irreversibly.

Bull, I hope I am wrong but I doubt the prednisone is going to make the remicade work. I know GIs sometimes feel that the biologic has "More of a chance of working" if you're in better condition or remission when you start them but I look around at stories I see here, and people it works for, it works for regardless of their condition going into it. i've seen people with severe flare ups turn around without prednisone. Also, you have to remember that Remicade, Simponi and Humira are all very similar. not to get you down but if TNF is not the mechanism driving your UC, none of them will work for you. Definitely try more than one but some of us, self included, have something different than the "norm". By norm, I mean the 65% who respond to Remicade. Entyvio is different and might work for you but I've definitely seen more failures than successes with it. I would try it if I were you regardless. I started entyvio when I was nearly in remission and it still didn't work for me. My next option was prednisone or surgery, i was ready for surgery at that point. I hope the prednisone plan works for you.