Remicade experiences...

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Numb78
Regular Member


Date Joined Sep 2007
Total Posts : 63
   Posted 4/7/2008 3:03 PM (GMT -6)   
I'm still dealing with this darn flare that just won't go away. I'm down to about 3-5 BM's per day but am still in some pain, seriously tired and still losing weight. I've dropped about 40 pounds over the last 6 months. I'm 6' and currently weigh about 155lbs.

Anyways, it's come down to Remicade. I'm in the process right now of getting the TB screening tests and the insurance stuff sorted out and then I'm ready to go. I'm just wondering from the people who are on this drug how fast were you feeling better? What are the day to day side effects like? I understand that it lowers the effectiveness of your immune system but is it as bad as Imuran?

I'm actually excited about getting the Remicade but I'm also afraid that if it doesn't work then I'm all out of options for drug treatments....
29 year old male, diagnosed after bad flare in Summer 2005, quickly brought into remission by pred and salofalk. 2 years symptom free after that!!
Currently in a flare since summer 07 - I desperately miss remission!!!

Current Meds: finally off Pred (after months of 40mg), 2000mg salofalk, calcium supplements, Pantoloc, Buscopan, Clonazopam, Cortenema
Started 100mg Imuran Jan 15/08 - no noticeable effect yet... aside from nausea, vomiting, fatigue...


toanova
New Member


Date Joined Dec 2007
Total Posts : 15
   Posted 4/7/2008 3:35 PM (GMT -6)   
Prior to going on Remicade, I was flaring with 15 or so toilet trips a day.  I've had 4 treatments and I'm down to 2 or 3  times a day.  I'm usually very tired the day I have the treatments but fine the next day.  I've had a few side effects headaches and some night sweats but that's been about it for me.  The Remicade has really help me.
4x3 Asacol
60/75 mg  of 6mp 
Remicade just started


kb5
Veteran Member


Date Joined Jan 2007
Total Posts : 1015
   Posted 4/7/2008 3:41 PM (GMT -6)   
I started remicade about a month and a half ago. I have my third treatment tomorrow and I am looking forward to it!

After my first infusion i didn't feel and different. The second dose was two weeks later and I felt a whole lot better within 24 hours. I went down about 3 bms a day and a lot less pain. It's been a month since then and I am feeling worse again. From what i've been told it really isn't til after the third dose that most really start to feel anything so i am hopeful. I talked to a woman who had been on remicade for ten years and she said the first year she felt better but it wasn't until after that first year she felt like she didn't have crohns.


Remicade has worked for a lot of people so i have remained postive. But there is also Humira out there potentially as well...

about the immune system...my gi says that its just things like tb that you need to be really worried about. They won't let you get an infusion if you are sick in any way (cold, flu, sore throat, funky looking cut) and the big warning he gave me was to always wear sunscreen (at least 30) becasue it does make you more susceptible to skin cancer. The woman i mentioned earlier said she just washes her hands a lot more now.

I haven't noticed any side effects at all actually. Which after two years of pred is nice.

I can't wait for tomorrow. I'll let you know how fast i see results.
Kelly, 30

Left sided UC diagnosed 1/98 age 19, Pan colitis diagnosed 1/07
Currently on 4x3 Asacol, 5mg pred, 150mg Imuran
Prontonix once daily for acid reflux, zofran twice daily for nausea, darvocet for pain
antispasmodics didn't work.

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