Remicade questions - getting ready to start

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Regular Member

Date Joined Nov 2006
Total Posts : 281
   Posted 9/14/2007 7:57 PM (GMT -6)   
Ok, I'm getting ready to start Remicade.  I'm actually really excited.  I've heard so many good things about so many people doing so well for so many years after taking it.  My doctor wants to re-evaluate after my third dose to see if it is working for me.  If it is then we will continue for a year and then evaluate whether I can go off or whether I need to stay on. 
Here are some of my questions:
How long is my insurance approval going to take?  I hate this waiting.  I'm having more problems now and have lost more weight (169 to 119 in 5 months). 
Has anyone re-gained an appetite on Remicade?  My appetite is so bad.  I know this sounds dumb but I'm never hungry and forget to eat because of that.  I make myself eat in the morning because I have to take some of my meds with food.
Thanks for any help or advice you might be able to give me.  Any tricks of the trade to make myself more comfortable at the beginning of the process?

Currently 3 x per day 1000mgs Pentasa, Entocort (3mgs), Prilosec, multi vitamin, biotin, Lortab, Librax (for spasms) & VSL#3 (for probiotics) or activia yogurt.

Preparing to start Remicade because I am steroid dependent now.

Regular Member

Date Joined Dec 2003
Total Posts : 494
   Posted 9/14/2007 8:21 PM (GMT -6)   

Im in a bad patch now so ill give you all the info based on when it was goin good for me. and trust me its worth it, it made me feel so good, i forgot i was sick for a long time.

i was always hungry no matter what but i think a lot if that had to do with being on 60 mg prednisone. everytime food touched my lips tho or sometimes when i smelled it it was bathroom time. it took me about 4 infusions to notice a big difference. probably after the third there was a definite decrease in the bathroom runs and the nausea stopped after my second of i remember correctly. i wasnt completely in remission until about 8 infusions or so but it got a little better each time.

for me when i get it i get flu like symptoms for about 3 days and then i feel better. for me it takes a week or so then i notice its definitely working an di dont have problems until about 7 weeks into it. the last week is worse but, SO not anything i cant handle.

bring a pillow and a snack when you go it can take awhile. takes me about 3 1/2 hours total more or less. i always bring one of those squishy neck pillows casue those chairs can be kind of uncomfortable even tho they are recliners. well thats what i get anyhow. and for some reason (and its not just me i heard some people do this) as soon as the cade starts im out! i sleep so hard for some reason it sedates me a little bit. i get premeds now benydryl, tyelenol and steriods so that makes me sleepy too. i always get a weird flush on my face for a few hours but its not a reaction or anything just what happens to me. and i always have s omeone drive me becasue i get a :weird: feeling, kinda buzzy or something i cant describe it just weird. its not borthersome and it goes away within 2 hours.




hmmmmm i think thats it :) i hipe this helps!


Crohn's Disease Diagnosed 12/24/03 (Thats Right, Merry Christmas to me!)
Probable MS

Regular Member

Date Joined Sep 2006
Total Posts : 181
   Posted 9/14/2007 9:15 PM (GMT -6)   
I have had two different insurance approvals on Remicade. One insurance company took 30 days. The other insurance company took 5 days.

I woke up starving the day after my first infusion. I felt immediate relief with in the first 48 hours of remicade. I too had lost a significant amount of weight and I gained it back within 3 months of being on remicade. Now I have even gained a few extra pounds :(

As for the treatment itself. It is not painful, you don't feel it going into your body at all. My only advice is don't drink to much before hand having to use the restroom with the IV can be a pain but not an issue if you have to go :) My only side effect I noticed of remicade was during my first 3 or 4 infusions, I would get gassy and bloated. I also would sleep for hours afterwards and then be up all night.

Best of luck to you, I hope Remicade works as well for you as it has for me!
want_2_be_well AKA Mel
32 year old Female
Diagnosed with CD 2006, had been ill off and on for over 10 years.
Also have seasonal allergies, milk allergy, and asthma.
CD Meds: Remicade every 8 weeks, Imuran 50 mg, Pentasa

Veteran Member

Date Joined Mar 2007
Total Posts : 4527
   Posted 9/16/2007 6:16 AM (GMT -6)   
Hi See you are on your way to Rem. and nice you are excited it is great to have a good outlook on things. I did great with my infusions and did not have too many problems I do have a few days of pain every second week or so in the body but otherwise I have done good. It healed my fistula and for me that was a big relief.I had my Rem. meds doubbled and did not notice any difference getting the infusion just like any other I had .My first one I had a bit of blurred vision but that was all and didn't last long. Hoping all the best for you and keep in touch be waiting to hear how you are doing .lol gail
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