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Crohn's Disease Forum » Treatment » Remicade/Infliximab » Started infliximab however I haven't noticed any improvement at all,only had 2 infusions but my doctor is suggesting surgery,have what to do


07-06-2014, 06:07 PM   #1
eoin
 
Join Date: Jul 2014
Location: dublin, Ireland
Started infliximab however I haven't noticed any improvement at all,only had 2 infusions but my doctor is suggesting surgery,have what to do

Iv just had my third infusion however my doctor has suggests possible surgery as I haven't seen any difference at all with infliximab and I'm wondering should I be giving it more time? It's so fustrating not knowing what to do when my nurse says it can take until I'm on the maintainance dose to notice a significant improvement and then your doctor says the opposite
07-06-2014, 07:35 PM   #2
theOcean
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It can take a few infusions before it works, but in some people they're either allergic (my case) or it just doesn't work. You can ask for an antibody test and then ask to be put on another similar medication. You should at least wait until you're beyond the loading doses unless you get a bad reaction, though.
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Diagnosis: Fistulizing Crohn's, 2011 (originally Dx as Ulcerative Pancolitis)
Past Medication: Pentasa, Remicade, Prednisone, Imuran
Current Medication: Humira (biweekly), 100mg 6mp
Unrelated Medication: 36mg Concerta, 75mg Pregabalin
Currently: In remission!
07-06-2014, 08:14 PM   #3
Patricia56
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I don't know enough about your situation to offer an opinion on surgery. I know my son's ped GI considers it a failure if Remicade is not effective within 12 weeks. This would be 2 weeks short of the first maintenance infusion.

However, your doctor knows all about your particular situation and may have good reasons for recommending surgery instead of waiting another 6 weeks. What did he say when you asked him?
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Dxd age 10, 2006 after nearly 1 year of active sx
Current CD meds: Remicade, Methotrexate and Omeprazole, Vit. D, Calcium, Folic Acid, Probiotic

Nothing I say here should be construed as medical advice. I am not a doctor. These are just my opinions.
07-07-2014, 12:57 AM   #4
FrozenGirl
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I went through my loading doses and didn't see any improvements but my GI had me do one more infusion 4 weeks after my last loading dose and I am really seeing the results now. I would ask your GI why he thinks surgery would be a better option for you.
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Dx: Ulcerative Colitis, Nov 2013
Currently on:
Mezavant 4.8g
Vitamin D 1000iu
Calcium
Tecta 40mg
Remicade: 600mg, every 4 weeks
Methotrexate: 15 mg (injection)
07-07-2014, 10:24 AM   #5
eoin
 
Join Date: Jul 2014
Location: dublin, Ireland
Hopefully Il know more soon, my doctor said I should have noticed a significant difference by this stage, he's referred me to a different doctor to discuss any further options in 2 weeks, iv gone through mezzavant, Imuran and pentasa in the last year so surgery may not be too far down the road I think, possible all depends on the severity of your uc:/
07-07-2014, 01:52 PM   #6
Kev
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I'm in the exact same situation. 2 doses, no sign of any real improvement. So either the 3rd dose does the trick... or surgery. The only other possible option for me... my doctor tossed out as just a possibility... was to 'double' dose on one of my Remicade infusions.
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Dx'd July, 2006
Meds: Flagyl, Cipro, Pred, AZA.. to no effect
Low Dose Naltrexone Nov 2007 - May 2014
Remicade June 17th, 2014
07-07-2014, 02:02 PM   #7
ande8150
 
Join Date: May 2014
I didn't notice much until my Dr doubled my dose, then I found it effective.

07-07-2014, 04:31 PM   #8
theOcean
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Hopefully Il know more soon, my doctor said I should have noticed a significant difference by this stage, he's referred me to a different doctor to discuss any further options in 2 weeks, iv gone through mezzavant, Imuran and pentasa in the last year so surgery may not be too far down the road I think, possible all depends on the severity of your uc:/

When I failed Remicade, I had a GI tell me I needed to get my colon out and it would just be inevitable. I had an antibody test done, and found out I was severely allergic and that's why I never responded. I went on Humira instead (another biologic) and went into remission.

Just because you've had a bad experience with one biologic doesn't mean that's the end of it for you! You can still find something that works. Also Pentasa/Mezevant doesn't work for a number of people because it doesn't treat beyond one of the layers of the colon I'm pretty sure. Plus: it's just an anti-inflammatory so it doesn't do anything preventative like biologics or immunosuppressants do.
07-10-2014, 05:34 PM   #9
jjk308
 
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Instead of surgery try Humira or one of the other biologics based on fully human antibodies. I developed an immune reaction to the mouse/human antibody in Remicade after 1 infusion and it stopped working completely. But I got in the Humira trials, and it worked great for a long time.
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Crohn's Disease Forum » Treatment » Remicade/Infliximab » Started infliximab however I haven't noticed any improvement at all,only had 2 infusions but my doctor is suggesting surgery,have what to do
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