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Regular Member

Date Joined Jun 2006
Total Posts : 321
   Posted 4/28/2009 8:54 PM (GMT -7)   
I had my first infusion yesterday. I had been feeling great for about a week prior with no real CD symptoms other than D (which is so normal for me). The main reason they started it is to close my fistula. Anyway the nurse mentioned that I should let her know if I start feeling worse. I woke up this morning with my stomach hurting and it gradually got worse throughout the day. I have been under a lot of stress for the last week so it could be that I was just about to "flare" anyway but I'm nervous since she mentioned that.

Has anyone else felt worse after starting Remicade? For those who didn't feel instantly better (as I clearly don't), how long did it take for the meds to start working?

I also want to start tanning because I am finally skinny during summer months and would like to wear shorts for the first time in 12 years :P I know there is an increased risk of cancer with Remicade though. Does anyone know if I should avoid tanning or does it not matter? I was going to ask my dr but I figured since I'm here.... :P

Oh and if anyone has been on it to close a long did it take for your fistula to heal? I am SO ready to be rid of this darned thing.
"Be ashamed to die until you have won some victory for humanity" ~ Horace Mann

Veteran Member

Date Joined Jul 2005
Total Posts : 733
   Posted 4/29/2009 12:07 AM (GMT -7)   
This is just one possibility...

right after I started Remicade I got what a lot of people call "rebound" symptoms. They include wickedly painful gas and bloating at times... and not the kind of gas that makes you sit around tooting all day - the kind that stays burried and painful. Maybe that's what's hurting you? If it is - the silver lining is that it doesn't usually last more than a couple weeks from what I remember, and then I felt great. No d or anything.
27f, dx'd CD July '05 after 6 fistula/abscess surgeries
Remicade '05 through '08, with no other maintenance meds
Noticing a real difference with a Gluten-Free diet.
Currently on:
Cimzia (started 2-12-09)
Probiotics, Digestive Enzymes, Forvia vitamins, and calcium chewies
Prednisone free, again! WHOOPIE!

Regular Member

Date Joined Jan 2009
Total Posts : 51
   Posted 4/29/2009 2:34 AM (GMT -7)   

I had my first infusion yesterday too.  I am so exhausted today!  I'm sitting at my desk in work nodding off.  No other side effects so hopefully the benefits will kick in soon...

In terms of tanning I would be very careful.  I take azathioprine as well so have been cautious about it for a while - use a high factor cream if you're out in the sun and don't go on sunbeds!

Diagnosed with Crohn's disease in Sept 05 aged 24

Resection in Nov 06

Currently taking 125mg azathioprine, 5mg prednisolone (tapering), multivitamin, probiotics and omega 3
Previously taken Entocort, Flagyl, Cipro, Pentasa

Rider Fan
Veteran Member

Date Joined May 2008
Total Posts : 1445
   Posted 4/29/2009 7:49 AM (GMT -7)   
I would not tan, we're at risk for enough health problems as it is.
32 y/o male. Dx'ed in 1999. No surgeries.

Current meds: Humira 2/27/09. 12.5mg prednisone. Udo's Choice Probiotics (30 billion). Can't tolerate any iron supplements or infusions.

Tried SCD, didn't work, now avoiding gluten and dairy.

Go Saskatchewan Roughriders!

Veteran Member

Date Joined Mar 2009
Total Posts : 1118
   Posted 4/29/2009 8:08 AM (GMT -7)   
Hi, I too had my first remi on monday for the same reason as yourself to close a fistula. woke up on tuesday and felt great  had more energy than i have had in months hoping it continues that way! Bev x 

Regular Member

Date Joined Jun 2006
Total Posts : 321
   Posted 4/29/2009 10:31 AM (GMT -7)   
Crohnielass- Grats!!! I am so excited for you!

Caz- I was really tired and out of it yesterday too.

I woke up this morning feeling pretty good though so who knows. I give up trying to figure me out lol.

I am wondering if I am more sensitive to sun right now though. Normally it takes me a long time to get a tan but from driving 2 hours Monday I got a crazy driver's tan. Then yesterday I was in the sun for a little bit and got burned, I woke up this morning with a tan...its so weird.

**edit** I forgot I was taking Cipro lol...duuhhhh
"Be ashamed to die until you have won some victory for humanity" ~ Horace Mann

Post Edited (MissCris) : 4/29/2009 12:50:46 PM (GMT-6)

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