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


10-16-2015, 03:23 AM   #1
EvieBaby
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Infliximab definitely not working

I was started on Infliximab almost 12 months ago and I heard positive things about it so had fairly high hopes.

I've been having this every 8 weeks and the last 2 times have been useless. My latest infusion made me gain weight very quickly, I've had stomach cramps, urgency, pain and bleeding. I've made it clear that I don't feel that this is working, and given how expensive this is I thought the doctors would take me seriously but they don't.

I just don't know what I can do to make them listen to me. I feel frustrated and fed up that I've been left in this position. There doesn't seem to be anything left to try and its left me feeling quite hopeless. Has anyone else not had successful treatment with infliximab?

10-16-2015, 05:26 AM   #2
ronroush7
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I was started on Infliximab almost 12 months ago and I heard positive things about it so had fairly high hopes.

I've been having this every 8 weeks and the last 2 times have been useless. My latest infusion made me gain weight very quickly, I've had stomach cramps, urgency, pain and bleeding. I've made it clear that I don't feel that this is working, and given how expensive this is I thought the doctors would take me seriously but they don't.

I just don't know what I can do to make them listen to me. I feel frustrated and fed up that I've been left in this position. There doesn't seem to be anything left to try and its left me feeling quite hopeless. Has anyone else not had successful treatment with infliximab?
I was on it for a while and then decided to come off because it was too expensive for me. I should have talked to the doctor instead of doing things on my own. I had to have a resection. In November of that same year, the doctor put me back on it. I ended up having a rare allergic reaction to it. I had a lesion that wouldn't go away with antibiotic. The lesion was in my scalp. I had to have it removed surgically.

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Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
10-16-2015, 06:07 AM   #3
shamrock15
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Have they changed the frequency or dosage for you? Mine needed to go from 8 weeks to 6 and my dosage has been increased as well - I originally got 4 vials per and now get 7. They can also add something like imuran. Have you seen any improvements at all in there or has it been a complete failure?
10-16-2015, 06:17 AM   #4
ronroush7
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They took me off completely. I am on Stelara now.

10-16-2015, 11:29 AM   #5
my little penguin
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Same thing Ds never ever made it to 8 week dosing for remicade
He was at a higher dose and every 6 weeks
Adding 6-no or mtx can also help things as well
Good luck
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10-16-2015, 03:58 PM   #6
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I came across the following article which may be of interest:

Infliximab – working/not working

Infliximab has been found to be effective in some cases of Crohn’s disease for many years but its use in ulcerative colitis is more recent. A significant number of patients with both conditions fail to respond to treatment. One of the reasons for this may be explained by a recent study from the Netherlands providing an interesting insight into why some patients with Ulcerative Colitis (UC) do not respond to infliximab. It is because infliximab is excreted in the faeces. 30 patients were studied during the first two weeks of infliximab therapy and the drug was detected in 129 of 195 faecal samples. Patients who were no better after two weeks treatment were found to have had higher amounts of infliximab in the stool on the first day of treatment.

The reason for the high loss of the drug is not fully understood but may be associated with the presence of large ulcers on the colonic lining in UC as this may allow more to leak out from the bloodstream.

(Ref: Brandse et al Gastroenterology 2015 149 350-355)

Source: http://www.crohns.org.uk/professor_h...ng-not-working
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Other supplements as needed: Adcal D3, Sytron (liquid iron, much more gentle on the stomach)
10-16-2015, 09:49 PM   #7
Lady Organic
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I came across the following article which may be of interest:
The reason for the high loss of the drug is not fully understood but may be associated with the presence of large ulcers on the colonic lining in UC as this may allow more to leak out from the bloodstream.
a strategy could be to bring the UC patient in remission with steroids first for example and then use the Remicade as maintenance.
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''UC-like Crohn's'' since 2001:
on: 25mg 6-MP (purinethol)+ B12 shots
minor hands/wrists chronic arthritis since 01/2013

Diet: ''IBD-AID'' : http://www.nutritionj.com/content/13/1/5+ organic food only
suppl Curcuminoid extract, Inulin,psyllium, apple pectin, Vitamin D

past meds:
pred 50mg, 5-ASA, cortifoam, Imuran (failed) Purinethol (success) methotrexate (failed CD and arthritis).
10-16-2015, 09:54 PM   #8
Lady Organic
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I was started on Infliximab almost 12 months ago and I heard positive things about it so had fairly high hopes.

I've been having this every 8 weeks and the last 2 times have been useless. My latest infusion made me gain weight very quickly, I've had stomach cramps, urgency, pain and bleeding. I've made it clear that I don't feel that this is working, and given how expensive this is I thought the doctors would take me seriously but they don't.

I just don't know what I can do to make them listen to me. I feel frustrated and fed up that I've been left in this position. There doesn't seem to be anything left to try and its left me feeling quite hopeless. Has anyone else not had successful treatment with infliximab?
pro-active and trust relationship with GI is key for us. We will be in relation with these medical teams most likely for a lifetime. It adds a lot of stress when we dont get along with them or when they dont listen/are inactive especially despite numerous attemps. This is unecessary burden on our shoulders. Consider the thought of finding another team who will be more caring of you. good luck.

Last edited by Lady Organic; 10-17-2015 at 07:52 AM.
10-19-2015, 03:27 AM   #9
EvieBaby
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Have they changed the frequency or dosage for you? Mine needed to go from 8 weeks to 6 and my dosage has been increased as well - I originally got 4 vials per and now get 7. They can also add something like imuran. Have you seen any improvements at all in there or has it been a complete failure?
No they haven't changed anything at all. I had my last infusion on 6th October and even just night I was having real urgency which I've not had for a while. And I've been going a lot more frequently.

I've been on azathioprine before but it didn't seem to work. They put me on humira once every 2 weeks and when that wasnt having much effect they just stopped it. There was no talk of ever changing the dose to weekly which they said could be done, or adding in any other medication.

I've got an appointment to go back in November to be reviewed and I'm going to see what they say. I'm not going to get my hopes up!

12-04-2015, 12:06 PM   #10
EvieBaby
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Well I had my review with someone decent who actually listened to me. I've got to have an antibody test and some other tests so just got to wait and see what they come back with. And now I've got terrible back pain to top it off!! This is so exhausting!

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