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Crohn's Disease Forum » Treatment » Remicade/Infliximab » Remicade not working


02-25-2016, 11:25 AM   #1
Bufford
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Remicade not working

I started to bleed again from my rectal area in the same manner as I was prior to treatment. I had my 3rd infusion last month, and I had already noticed inflammation and a bit of blood two weeks in after the 2nd infusion.

After the 3rd infusion I started getting more inflammation in the area threatening to abscess. I am on a colostomy so I don't have to deal with stool passing through the rectum, but if I did I'm sure it would be painful to pass stool.

The bleeding started increasing last week, and now over the past couple of days its as though the Remicade stopped.

I've also had many nasty side effects, over the past couple of weeks my skin is dry, rough and very itchy. It goes in waves, one day I look and feel better the next day the skin burns, red dry itch all over my face, and to a lesser extent on my body. I am also noticing hair loss. Then since the start of the infusions there are the bad headaches, joint pains, major abdominal pain enough that I cannot finish my meals at times, and I get cold easily and do not feel like leaving the house. Lately my temper has become short. I never dealt with so many symptoms prior to Remicade.

I may go back to the all natural route I took for almost ten years that worked well for the most part; Pain management, Stress control, and Diet.

I am getting bloodwork done today to see where this is going. Not sure I want to continue this treatment. I lost the winter as I have not spent nearly as much time out cross country skiing and not one night at the remote cabin due to simply feeling so lousy.
02-26-2016, 05:00 PM   #2
fuzzy butterfly
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Hi mmm i think that remicade is probably not for you . I suggest you tell them whats happening,if you aint already .I had a little hair loss but that was about it when on it. Did bugger all to help my crohns tho. Pain n stuff just got worse.. next stop for me then was surgery. Been great since that 2yrs ago. I hope that you get something that works for you my friend 💕💕
02-26-2016, 07:27 PM   #3
ronroush7
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Hope they find the right medicine soon.
02-27-2016, 11:21 AM   #4
Bufford
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I saw the doctor Thursday and she noticed right away that I have fluid retention when she checked my ankles. Fluid retention is hard on the heart which would explain why I am shying away from the outdoor activities I used to engage in regularly.

I have this abdominal pain radiating across my abdomen that can be beyond my tolerance limit. I hold off on the pain pills for as long as I can, but by evening I cave in a take a percocet to get some relief. I had blood work done and now will have to wait for the results. I am scheduled for the next infusion on March 15, so I should know before then.
02-27-2016, 11:34 AM   #5
ronroush7
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Best to you.

02-29-2016, 12:11 PM   #6
Bufford
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I read up on the rash problem on my face and it has all the characteristics of the Malar Rash indicative of Lupus. Remicade is known for a rare form of Lupus like side effects. It explains why I feel terrible. I cannot tollerate any kind of physical excersion without getting breathless. The side effects roll like waves, they back off for a day, then rise again. Abdominal discomfort keeps me repositioning myself and a lousy appetite. I cannot sit in one position long due to the pain radiating across my abdomen from just under my ribs down to below my belly button. I continue to have frequent urination, I hope I didn't damage the kidneys and liver. There has got to be one heck of a tug of war going on between my immune system and the Remicade.
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