Less than 24 hours till Remicade....

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RA+CDhouse
Regular Member


Date Joined Nov 2007
Total Posts : 99
   Posted 3/19/2008 8:55 AM (GMT -7)   
OK, so, it's less than 24 hours till hubby's first infusion.  Thanks to all who gave tips about pillows, headphones, being hydrated, etc. for the first one.
 
Next question:  what kind of weekend should we plan for?  He gets the infusion tomorrow; what do you all feel like typically that first day and few days afterwards?  Is it too much to hope that he might start actually feeling better after only the first infusion, or should we expect to not feel anything for several more weeks?  Will he feel really crappy for afew days?
 
TIA!
 
--t
Learning can only happen when a child is interested.  If he's not interested, it's like throwing marshmallows at his head and calling it eating.  Make him interested!


sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 3/19/2008 9:33 AM (GMT -7)   
I guess that I noticed a difference a few days after my first infusion, but didn't really start to feel a lot better until after the second, maybe third. (it's been a few years) I always remind myself that even if the drug works, there is already a lot of damage inside the intestinal tract and that will take time to heal. That's just my experience, though. Oh, but I never felt worse after an infusion... meaning I never got any flu-like symptoms.
--39 year old female, dx as UC in '04 (1st symptoms in '03), switched to Crohn's in '05
--1 fistula, crohn's colitis, limited to large intestine
--rejected (reaction/didn't work): Asacol, AZA, 6-MP, MTX, Remicade, Humira, prednisone
--stuck on methylprednisolone
--tried Prochymal in Phase III study (can't wait til it's approved!)
--waiting to start Tysabri
--single mom to 10-year-old girl


PaloPalo78
Regular Member


Date Joined Feb 2008
Total Posts : 42
   Posted 3/19/2008 10:17 AM (GMT -7)   

Hi

Maybe i was lucky but the remicade had an almost instant affect with me and i felt a huge difference the next day , although i was tired and weak - my crohns felt like it was put on "pause" and apart from a bit of gas everything went back to normal . as mentioned before , the gut needs time to heal all the damage so i couldnt eat anything other than simple foods that i had been for the flare up anyway . hope it works so well for you too . I have heard that others also have had the same good fortune with it , i think in terms of what you can do that day or the day after may depend on what they give you with the remicade  i.e anti-allergy meds , also i seem to remember some posts about flushing with saline and how much or for how long . Im not sure if you will have any say or control on this as the hospitals seems to do it there way !!

expect tiredness from the the infusion and hopefully a different person the next day

best wishes and fingers crossed for you 


CatMan
Regular Member


Date Joined Jun 2006
Total Posts : 289
   Posted 3/19/2008 2:07 PM (GMT -7)   
I also felt better the next day...as far as Crohn's symptoms go anyway. I recall the main side effect was feeling tired. But, I don't know if that was the medication, or other factors.

Good luck though! I hope this helps your husband as much as it did me, and many others!
Current Medications:

Pentssa, 1000 mg qid
Vitamin B Complex
Trader Joe's Probiotic
Folic Acid
Remicade infusion; every 8 weeks
Klonopin
Ambien, PRN
Seasilver Whole Food Liquid Nutrition


Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 3/19/2008 5:13 PM (GMT -7)   
For the first 2 years of infusions, I felt great the remainder of the day I got the infusion. I also felt so much better for the next 4-5 weeks and then symptoms would return. I did notice an BIG increase in my appetite for 3-4 days. Several of us here have discussed the "Remicade munchies" before.
Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, small fiber peripheral neuropathy, avascular necrosis, diffuse connective tissue disease, Sjogren's Syndrome ?
 

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