Comments on: My Remicade Experience is Great for UC

By: julie

julie — Tue, 11 Jan 2011 23:13:55 +0000

I’ve been reading all about this drug. I’m really pleased for all of you that your doing well. My father is currently in hospital he’s been suffering for 3 1/2 years and the past 2 years been very bad i’m talking constant flare up every day of his life and he’s now not well. I’ve been trying to convince him to ask his consultant for this drug but he won’t!! thinks the doctors knows best. I’m gonna print your messages hopefully this will help
Thanks all and GOOD LUCK.

By: Adam

Adam — Thu, 26 Aug 2010 14:54:12 +0000

HI Milka,
I know what you mean about strange joint/tendonous pains. I had/have that too. I have been wondering for a while if I was the only one, but since chatting and emailing with some others from the site it turns out that there are quite a few of us going throgh the weird pains that pop up in different places, come and go etc…
I can’t for the life of me nail down just yet what is triggering this stuff to get sore and what causes it to go away. Even stranger is that it appears even when the typical colitis symptoms are asleep. I definitely don’t have any answers, but even more definitely you are not alone with what you are talking about!

By: Katherine

Katherine — Thu, 26 Aug 2010 13:29:19 +0000

Remicade (infliximab here in the uk) is amazing. It has given me complete remission after trying nearly every drug with limited success. I am on the 2 monthly maintenance dose now and feel and look almost normal again, first time in 3 years I feel I have my life back. My advice is persevere and let it do it’s job. It’s slow and steady at first, but you will
Improve. My best wishes to everyone fighting this appalling illness, it’s always a struggle, but drugs like remicade gives us hope.

By: Milka

Milka — Thu, 26 Aug 2010 13:00:12 +0000

I am currently on Remicade and wondering if anyone is having any similar side effects? Get hot red rash that comes and goes for no reason any where on the body, hip pain, tendonous pains- on any part that is overused- I am a Massage Therapist and am sore everyday and I only work 3 days/wk. Also is anyone else just tired all the time-I could nap everyday…is this a side effect or my body fighting colitis even though I am not in a flare. Just thought I would put this out there….if anyone having similar side effects please let me know!

By: Milka

Milka — Thu, 26 Aug 2010 12:55:04 +0000

Just keep taking the Remicade…I took until #4 infusion until I started really seeing a difference then it got better and better with each one. It depends on your body but dont give up hope just yet! Keeping my fingers crossed for you!

By: Milka

Milka — Thu, 26 Aug 2010 12:53:12 +0000

Hi there! I am currently taking Remicade and still on Pentasa (8 tabs daily). But it is keeping me in check, so I cannot complain!

By: Anonymous

Anonymous — Mon, 09 Aug 2010 06:03:22 +0000

For those who have had success with Remicade…is that the only drug you need to take to stay in remission or do you still need other meds? I’ve been on asacol (12/day) for 10 years and recently went off Imuran and methotrexate due to rash. Just wondering if Remicade alone does the trick.

By: Michelle

Michelle — Sun, 25 Jul 2010 22:44:51 +0000

My name is Michelle. I have been flaring for almost a month…on so many meds I can’t keep track. Just had my second round of remicade…doesn’t seem to be helping…how long did it take before it took effect? They say it can take up to 3 months, but I’m really hhoping that something happens before that…
Thank you for posting, its helpful to hear other peoples stories.
Be well.
Michelle

By: Tracey

Tracey — Sun, 25 Jul 2010 03:35:38 +0000

Sarah:
Thanks for the positive reponse. I will have my third Remicade tx in a couple of weeks. I was lucky that my gastroenterologist believes in top down approach for treatment and my insurance went with it/unfortunately like you say Remicade is expensive/$15,000 an infusion. I am hoping for good results (esp at that cost!)
I felt great after first infusion, not doing the best after the second. The second infusion may have worked if my primary doc would have recognized I had thrush in my throat and not placed me on amoxicillin. Guess I don’t tolerate amoxicillin like I used to! I ran to my gastro doc and he has me on the right med for thrush now. But what an ordeal and a set back.
RU on anyother meds/or just Remicade now.