Remicade - OK I want to know everything

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Regular Member

Date Joined Jul 2006
Total Posts : 330
   Posted 5/7/2009 5:04 AM (GMT -7)   
Hi there all the way from New Zealand - and the Ulcerative Colitis section of Healing Well.......Im hoping all you Remicade users can help me out.....I have tried Aza and 6MP for my UC and it seemed to have topped working after around 6 months each time....NZ are trialing Remicade and I have been asked to take part ...but I would really like to know what the real users think of it ...Any feedback would be greatly appreciated.

Thanks in advance
38 year old female
UC - Diagnosed 2006
HLA-B27 Gene
Iritis 2008
4 x Asacol
100mg Mercaptopurine (6MP)

Regular Member

Date Joined Aug 2008
Total Posts : 305
   Posted 5/7/2009 5:12 AM (GMT -7)   
Ive been on Remicade since August of 2008. Mine worked well with no side effects for the first 4 to 6 months but the last two doses didnt make it for the whole 8 week interval before losing its effectiveness. Now Im lucky to get 4 or 5 weeks of relief from it. My doc has mentioned giving it every 4 weeks but I havent started that yet. It's also very effective for the arthritis I have......when its working.
Crohns 30 years. Ileostomy for 15 years. Symptom free for 14 years until 8 months ago. Now on Remicade, B-12 injections and iron. Feeling much better!
God Bless. Tony

Regular Member

Date Joined Dec 2007
Total Posts : 414
   Posted 5/7/2009 5:57 AM (GMT -7)   
Was an absolute life-saver for me, I was facing an ostomy bag and had really bad arthritis. Then my hospital got this new drug, I was one of the first few patients to receive it and so it was an eleventh hour thing for me - they gave me one dose of it to see what happened and it was amazing. The next day my visible inflammation had gone, we couldn't believe how quick it worked for me, literally within about a week I felt absolutely fine, my bloodtests were normal. Back then as it was so new they only gave it to you when your symptoms returned - it kept me symptom free in remission (maintained by weekly methotrexate) for 2 years, so I had another and it kept me in remission for 3 years, then the next one I was in remission for 6 months and after that I had to have another two 8 weeks apart to get rid of symptoms and blood results to normal, but on that occasion I had become severely ill very quickly and I wasn't able to be treated right away so that might have been why it took two doses. I find that after the infusions I get side-effects lasting about 2 weeks but that could be because I'm an episodic user, I go a bit manic and have insomnia and agitation but its a small price to pay in my view. Its been 10 weeks since my last one and I'm doing fantastic still and fingers crossed it lasts this time, I really hate to imagine where I'd be now if it weren't for this drug, I just hope it continues to work this well for me!  

Veteran Member

Date Joined Apr 2005
Total Posts : 2346
   Posted 5/7/2009 7:27 AM (GMT -7)   
It saved my life! I have been on it for 4 1/2 yrs and will be on it until it quits working for me. I am in remission and have been...I do what I want, eat what I want. I have no side effects from it either. Go for it!

Regular Member

Date Joined Jun 2006
Total Posts : 289
   Posted 5/7/2009 7:32 AM (GMT -7)   
I have also had good results with Remicade. 2 + years now, and its still doing the job. I had immediate relief after my 1st dose. I would give it a go! Good luck.
Current Medications:

Pentssa, 1000 mg od
Vitamin D
Red Yeast Rice
Calcium/Magnesium Supplement
Nature's Way Primadophilus Bifidus Probiotic
Remicade infusion; every 8 weeks
Ambien, PRN
Seasilver Whole Food Liquid Nutrition

Veteran Member

Date Joined Mar 2009
Total Posts : 1118
   Posted 5/7/2009 11:38 AM (GMT -7)   
Hi i only started two weeks ago and it was great felt the benefit of it the very next day had loads of energy and still feeling great next infusion is on mon i can't wait!! best decision i made in a long time Bev x  smilewinkgrin

Regular Member

Date Joined Apr 2006
Total Posts : 164
   Posted 5/7/2009 11:43 AM (GMT -7)   
Ive Have had my first 3 infusions so far. It is working great for me. I have a massive acne break out and minor rashes on my arms when I shower BUT I am picking my battles and they dont stand a chance against     I think its a small price to pay for happiness. I just hope it works for years and years  tongue            Good luck

Regular Member

Date Joined Feb 2009
Total Posts : 128
   Posted 5/7/2009 12:53 PM (GMT -7)   
I had great experience with Remicade at first, and then it tapered off in effectiveness for me. My insurance went in and out, so it was too expensive for me. It certainly felt like a wonder drug, but now it doesn't seem to work.
I am a pre-30yr. old who has been diagnosed with Crohn's for 14 years.  Symptoms change from cramping and weight loss to severe anemia with fatigue and diarrhea. 
I'm DONE (D-O-N-E, DONE!!!) with immuno-suppressants.  Tremble, yee Pharmacuetical companies, for you will not withstand the aggressive onslaught of our healing!
new prescription from natural doc,
3.5 grams Chlorella daily.
4.5 mg Low Dose Naltrexone nightly. 

Elite Member

Date Joined Sep 2005
Total Posts : 10404
   Posted 5/7/2009 4:44 PM (GMT -7)   
If you click on the "new meds" link in my signature you'll find a lot of good threads where we've discussed Infliximab / Remicade.

Good luck with your decision! Before you commit to the trial, I would ask the people running it whether you'll be able to keep taking the medication once the trial is over. A delay of more than four months between infusions increases the risk of you having a nasty reaction the next time you receive Infliximab, and you may be unable to take the drug again.

In other words, if you are only going to be getting the drug for the duration of the trial, I would be reluctant to participate. Infliximab has been the magic bullet for many, many patients. You don't want to lose the chance to have a sustained remission, simply because nobody will give you the drug once the trial is over.

Co-Moderator Crohn's Forum.

New meds thread

Post Edited (ivy6) : 5/7/2009 11:22:41 PM (GMT-6)

Aimee =)
Veteran Member

Date Joined Jun 2004
Total Posts : 1020
   Posted 5/7/2009 6:29 PM (GMT -7)   
I had a great experience on it, it truly was a life saver for me. I was on it 2.5 years before my body built antibodies to it and started to react to it (it also simply stopped working). I loved it while it worked! Good luck!

Regular Member

Date Joined Jul 2006
Total Posts : 330
   Posted 5/10/2009 4:16 AM (GMT -7)   
Thanks so much everyone..keep the comments coming in .....
38 year old female
UC - Diagnosed 2006
HLA-B27 Gene
Iritis 2008
4 x Asacol
100mg Mercaptopurine (6MP)

Regular Member

Date Joined May 2009
Total Posts : 20
   Posted 5/10/2009 8:09 AM (GMT -7)   
I guess I'm the first person replying who had a bad experience with Remicade...

First infusion went fine, in fact, it may have made my CD a little better after just one infusion. I was extremely sick at the time.

Second infusion was a disaster. about half way through (when they bumped the infusion up to full speed), I couldn't breathe. It was really scary. They gave me cortisone and benadryl and after about half an hour, I was able to continue the infusion.

The next day, I started with secondary reactions to it. Every muscle in my body hurt - like a really intense work out hurts - but all over. Then my white blood cell count dropped to 'dangerous' (less than 3, whatever that means). That was it for me and Remicade. Once the medication wore off, I returned to normal levels and have been fine since.

I've heard a lot of good things about Remicade, how some people have been in remission for years with it - and I wish it had worked. I think if it's going to work for you, you will know within 6 weeks of starting it. Good luck!
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