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Worse on Remicade?

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Ulcerative Colitis
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Posted 5/27/2014 4:40 PM (GMT 0)
I just had my third infusion last Friday and was trying to be hopeful that I would see improvement (even if it's slow!!). By Sunday I was feeling worse than ever with increased BMs and horrible stomach cramps/pain. The cramps seemed to be more on my right side which is even more confusing. Now it's Tuesday and I still have bad cramping, lower back pain, and 4-5 BMs a day.

Anyone else experience worsening of symptoms on Remi? Could this be something else? Would increasing my dose help or make me even worse???

Thanks
Posted 5/27/2014 4:51 PM (GMT 0)
Can't answer your Remicade question. Are you sure the fish oil is helping you? It can make some worse. Your signature indicates you are trying gluten free, dairy free. What are you eating? If you are eating something different than usual that could also be making you worse.
Posted 5/27/2014 4:53 PM (GMT 0)
I have no idea on the fish oil....might try cutting that. I have been doing gluten dairy free for about a month and have seen no indication that it's helping. I was desperate to try anything! I think after a month with no change I will likely return to my normal diet....
Posted 5/27/2014 4:56 PM (GMT 0)
This happened to me when I was in Remicade. At first I didn't get worse and saw a small (very small) improvement after the third infusion but from there it went straight down hill and I got worse and discontinued taking it.
Posted 5/27/2014 4:57 PM (GMT 0)
If you have no improvement after a month on the elimination diet, I highly doubt you need to stay on it
Posted 5/27/2014 5:03 PM (GMT 0)
ByeByeUC- did you try upping the dose?
Posted 5/27/2014 5:04 PM (GMT 0)
Have you been tested for C-diff?  I wonder if this is the case and the remicade is making it worse.  Just a thought.

B

Posted 5/27/2014 5:14 PM (GMT 0)
I don't think I've been tested for it specifically but I did have a scope back in Feb. I've also been on antibiotics twice since this flare started....would that be a factor? How is C Diff tested for?
Posted 5/27/2014 5:25 PM (GMT 0)

Vangirl said...
I don't think I've been tested for it specifically but I did have a scope back in Feb. I've also been on antibiotics twice since this flare started....would that be a factor? How is C Diff tested for?

Why did they give you antibiotics?

Seems like it screwed up your gut and now you can't tolerate anything. I don't think diet will fix it, and remicade is possibly making it worse.

I'd get on a probiotic regimen - add fermented foods, kefir, yogurt, etc, etc to get some of that bacterial diversity back.

Also, try to eat anything you crave and can tolerate. I think you need any kind of nutrition you can get in these kind of situations. White bread, potatoes, turkey, steamed veggies and other low residue foods might be easier to tolerate.

Best.

Post Edited (Guardian7) : 5/27/2014 11:28:19 AM (GMT-6)

Posted 5/27/2014 5:31 PM (GMT 0)
I've had two UTIs.....possibly Remicade induced :(
Posted 5/27/2014 5:35 PM (GMT 0)
I'm sorry about the UTIs. What antibiotics were administered to you?
Posted 5/27/2014 7:20 PM (GMT 0)
C-diff could def. be caused by antibiotics. It is tested by a stool test but must be tested for specifically and they usually do a couple to make sure results are accurate. I would ask about this and def. take probiotics and do/eat the fermented foods that Guardian mentioned.
Posted 5/27/2014 9:39 PM (GMT 0)

Vangirl said...
ByeByeUC- did you try upping the dose?

yes, we did up the dose and I went in at the six week mark instead of 8 weeks but it just didn't do anything for me.
Posted 5/28/2014 12:07 AM (GMT 0)
Sounds like C diff from antibiotics. Quite likely! Just ask your GI for a stool test for all those GI bugs.
Posted 5/28/2014 12:31 PM (GMT 0)
Remicade didn't help at all by third infusion for me and I was in hospital after it. I had a bladder infection too they said.
Posted 5/28/2014 12:39 PM (GMT 0)
Either there is a"bug" at play, the Remi isn't at therapeutic levels for you, or it is just not going to work. Try working on the first two options before giving up on the Remi. A Prometheus test can assist the doc with Remi, and your stool should be tested for all other bugs. Blood work may shed light on other inflammatory markers to see what is going on. Best.
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