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11-15-2011, 02:55 PM   #1
moogie
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Location: Laval, Quebec
in pain again...

Hello everybody...

I'm 1 week away from my 5th remicade treatment, Whenever I get around 10 to a week away I start having terrible pains again. It's so terrific to be 7 weeks without any pains that when this starts it's a real hell!!!

Anybody else have this situation?

I'm seeing my doctor 2 days after the treatment. I hope he can make some adjustments to help me out with that last week or so.
__________________
I'm the Rat Man!!
DX - CD summer of 1987
Current Meds -
Remicaide
Getting Remicade every 8 weeks
Getting 5mg now. full dose. cost 5500$ )
Purinathol 75mg a day


3 resections
2 colostomy
One Ileostomy
Back to normal since May 2015
On Remicade Since April 2011 I am alive again!
11-15-2011, 07:39 PM   #2
Jessi
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Hey, Moogie. It sounds like you may be a candidate for infusions every 7 weeks. Ask your doctor. I know several people that have had to move theirs closer together. Good luck.
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~Jessica

Dx'd with Psoriasis in 1993
Dx'd with Psoriatic Arthritis in 2004
Dx'd with Ulcerative Colitis on May 18, 2011

"Life isn't about waiting for the storm to pass... It's about learning to dance in the rain." ~Anon.
11-15-2011, 07:43 PM   #3
Ducey99
 
Join Date: Oct 2011
Location: St. John's, Newfoundland, Canada
When I initially started remicade I was getting it every 5 or 6 weeks I think. I gradually spaced out my infusions to the usual 8 weeks over a while, and eventually never had any symptoms. Like the poster above said, I'd ask your Dr. about an infusion every 7 weeks.
11-15-2011, 09:52 PM   #4
scoutfinch
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The effects of my Remicade treatments are lasting only 3 out of the 8 weeks. This is even after my doctor doubled the dose. It's been depressing, especially since Remi started working so quickly when I first started it. It worked perfectly for 3 months, and then stopped being as effective. I think I'm on my 6th infusion now. Might have to increase the frequency.

To have a drug work so well and then stop working so well so quickly has made me a little bitter, to be honest.
11-25-2011, 02:31 PM   #5
moogie
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I've had it changed to 6 weeks for the next three infusions. Doctor wants to see how things will go from there. I think i will be in heaven!!!
11-25-2011, 04:05 PM   #6
Jessi
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I'm so glad you had it changed! I really hope it works for you! Keep us posted!
01-09-2012, 08:57 AM   #7
moogie
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Ok so I just got my 6th infusion this last friday. I got it before things started to get bad. And boy is this great. three days later and I feel even better than usual. I think getting it every 6 weeks will be great for me.

God I love this medicine, Up your a$$ Crohn's MOuahahahahahahahaha

Sorry I just took my pill I'll be ok :-)
01-09-2012, 09:16 AM   #8
SarahAnne
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Awesome! My remi infusion is tomorrow, I've been feeling like crap for about 2 weeks so I'm super excited! I will probably need to go on maintenance meds or up my schedule to every 6 wks....GI appt Feb. 7, we'll see what he says.

Glad you're feeling so much better between doses!
__________________
Dx'd Crohn's April 1996
Bowel Resection w/appendectomy Oct 1996
Gallbladder removed Nov 2005
4 procedures in March/April 2010 to remove a kidney stone
Dx'd Dyshidrotic Eczema April 2011
Dx'd Pancreatitis July 2011
2nd bowel resection 10/12/11 - I have 130cm of small intestines left!
Dx'd Chronic gastritis April 2012

Currently taking:
Cholestyramine powder 1-2x daily
Remicade 5mg/kg every 8 wks
Vitamin D3, B12
01-09-2012, 09:34 AM   #9
moogie
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I guess it's important to adjust the dosage for everybody.

Once that is done this drug really works wonders.
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