Remicade response

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jpnutritionfirst
Regular Member


Date Joined Apr 2009
Total Posts : 383
   Posted 2/8/2010 5:47 PM (GMT -7)   
Hi I've been on Remicade from probably around 7 months. I started strict SCD diet a few months before starting Remicade. I developed diffuse muscle twitching 9 days after my first infusion. The twitching has never stopped and I have for the most part gotten used to them. My GI doctor is thinking about stopping the Remicade to see what happens with the twitching. For me I don't notice Remicade wearing off towards the end of the 2 months. I also see no improvement right after I get an infusion.

I want to know if this response is typical among Remicade users. Do you notice a difference at the end of the two months? Do you see noticeable improvement right after your infusion? The fact that I don't experience this means two things to me: either the Remicade is not doing much and I can suffice on SCD or the Remicade is perfectly dosed. The thing is that I've noticed steady improvement in my condition since the initial dose, which seems to be unrelated to the infusions.
Crohn's Colitis diagnosed 6/08
Organic SCD since 4/09
Remicade since 6/09
Boswellia + Natren's Healthy Trinity probiotic + Cinnamon + Wild Oregano Oil + vitamin D + zinc + Barlean's fish oil
Remission


JavaJay
Regular Member


Date Joined Mar 2009
Total Posts : 452
   Posted 2/9/2010 5:58 AM (GMT -7)   

First off...sorry you still don't feel well.

I do have to say that if you are seeing some improvment in your CD..it might be from the Remicade.  You might not be seeing any big results right aways..but maybe you need a larger dose.  You might not be getting enough to make a big change but it still might be doing it job...just slowly. 

Definetly talk with your doctor.  He should have the best insight into this.  I saw major improvement after my first 2 doses but after the 3rd it feels like it didn't take at all.  Now my doctor is going to do a colonoscopy next week to see if it is indeed healing me and then might raise my dosage. 

As far as the twitching...where exactly is the twitch.  Could it be from dehydration or lack of potassium?  Just a thought.  Have you had any blood work done for it?


36 yr old Male with Crohn's Disease since '88 - No Surgery yet
 
Been on almost every type of drug with bad results
Remicade since Nov 2009
Prilosec 20.6mg - 2x a day
Multivitamin daily


jpnutritionfirst
Regular Member


Date Joined Apr 2009
Total Posts : 383
   Posted 2/9/2010 12:55 PM (GMT -7)   
Oh no I do feel very well. My GI situation is almost perfect. The thing is my improvement has been very slow and more correlated with diet than Remicade. It very well could be a combination, but I tend to think that Remicade either works for you or doesn't. It didn't work that well when I first got it.

I did get blood work done multiple times. Potassium/calcium/magnesium and everything else normal. ANCA negative.
Crohn's Colitis diagnosed 6/08
Organic SCD since 4/09
Remicade since 6/09
Boswellia + Natren's Healthy Trinity probiotic + Cinnamon + Wild Oregano Oil + vitamin D + zinc + Barlean's fish oil
Remission

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