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Remicade experiences

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Ulcerative Colitis
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Posted 4/9/2009 12:51 PM (GMT 0)
I'm thinking of asking my GI to put me on it at today's visit. I had a long talk with a friend of mine who is a rheumatologist and highly recommends it, but she did mention that due to possibility of developing antibodies, doctors want you to stay on it for at least a year even if you go into remission.

I forgot to get more info to see if it works like prednisone in suppressing your immune system and making you more vunerable to infections.

If you are on it, how long have you been on it, do you get sick more often because you are on it and are you in remission?
Posted 4/9/2009 2:10 PM (GMT 0)
Remicade is my miracle drug. I have not fully been in remission but it has helped me keep symptoms tollerable and manageable. It does supress your immune system, so I am careful about being around others that are sick. I have not had any problems with getting sick yet though (knock on wood). I was told that I will be on remicade long term, and that I can't stop it and then start it back up again later. So even if you are in remission, you are supposed to continue with treatments.

I am pretty badly flared up right now due to other circumstances, so my dr pulled ahead my remicade. I'm counting down the days until I can get my miracle drug and feel better again. :)

Good luck!
Posted 4/9/2009 2:38 PM (GMT 0)
I only had my first infusion two weeks ago. And I'm going for my second one in a few hours.

Even though most people aren't even supposed to feel the effects from the first infusion, just one infusion finally ended the constant pain that I was in for three months. I've still got a small amount of bleeding, but I can actually go out and live life a little. I'm down to 3-4 BM a day instead of 9-10, and with no pain/urgency. And I've been told if the first infusion made me feel that good, the second and third should be even better. So far I haven't been on the drug long enough to comment on whether or not I get sick more often.

Yes. You cannot stop and start remicade because your body will develop anti-bodies to it. So each time you stop and start again, the drug will lose effectiveness.

I was extremely apprehensive towards starting remicade though, since it is a toxic drug. It has risks and side effects like any other drug. Although it has worked well for myself and others, you should get all the info you can and make your own decision.

Good luck.
Posted 4/9/2009 2:51 PM (GMT 0)
I've been on Remicade for just over a year now. I was in remission by the 3rd infusion. I have not suffered any side effects from it and have not had any problems being around sick people. It hasn't kept me flare free though. I started flaring very mildly when I tried to go from 6 weeks to 8 weeks between infusions. I'm back on track now though.
Posted 4/9/2009 2:52 PM (GMT 0)
Remi has been an awesome med for me! I was so sick at the time I went for my first infusion, I was hoping it would work -- and it did like a charm. But this is my story, each med works differently for everyone.

Posted 4/9/2009 6:48 PM (GMT 0)
I can't wait to try it! Waiting for the approval...any day now, I hope.
Posted 4/9/2009 8:34 PM (GMT 0)

I was on Remicade for about two years.  For the first year and half it worked wonders.I was the biggest supporter of this drug.  I figured no matter what the long range side effects were I didn't care because I was living my life out of the bathroom.  I could tell though when it was time for my next infusion because my symptoms worsened, but for the most part I felt great on it.  In the beginning I was taking 6mp but was able to come off of that medicine since the Remicade was working all by itself.  I had an infusion every seven weeks.  But after the year and half my symptoms were getting out of control and since it is such a major drug, I stopped getting the infusions.  In hindsight, I wish I would have ridden out the flare because now I"m back on 6mp and things are not great.  My blood was tested for anti-bodies for Remicade and I didn't have any.  I hope that if my dr and i decide to try it again that it will be just as successful.

Good Luck and it is a drug I believe in.

Posted 4/10/2009 12:45 AM (GMT 0)

Shelliesv,

I'm definitley thinking about Remeicade as welll and doing all the research I possibly can.  I have an appt with my Flordia GI on 4/30 to talk about it in more detail but I'm flying up to my parents in NY to get a second oppinon from one of my dad's freinds who is a GI. 

Most old school doctors who I speak to cringe when I mentione Remicade because they beliefve that theres no long term data to state that the drug is ok for you; the drug has only been out since '98.  Also, it seems that most who are on the drug have succes for about a year or 2 and then they are back to their regular symptoms.  Is it worth it to be in semi remission for a few years and then be back in to UC symptom mode along with the possible side affects of Remicade? 

Anothe reason Im a little skeptical about starting Remicade is because it's said to be the last resort, I'm only 25, I dont want this to be the last resort before I have to have my colon out, I want my last resort to come a long way down the road.

It's a really tough decision but who knows, it could be a good one.

Posted 4/10/2009 2:00 AM (GMT 0)
I have Remicade every 6 weeks. It's really helped me a lot, although I still have it a little rough in the mornings. Some mornings I'm in the bathroom a lot, but things usually settle down by 7 am and I'm fine the rest of the day, I also feel a tad nauseous in the mornings, but by 10 or so I can usually eat a little, then I'm fine the rest of the day. I know that doesn't sound great, but compared to where I was -- ready to rip my colon out MYSELF!! -- it's been a godsend. So, yeah, even if you don't achieve 100% remission, depending on where you are, it may be worth it.

I don't sick much, I am careful about hand washing, etc. but when I DO get something it hangs on for months. Right now I have had a low-grade head cold for about 6 weeks.

Some people report feeling tired after their infusions, but I have never felt that way. In fact since I know it's making me feel better I feel somewhat energized.

The infusion can take more than three hours the first time (usually 2 1/2 to 3 hours after that) so be sure to take along a book, an iPod, Zune or other MP3 player, crossword puzzle, anything to keep yourself entertained. I usually schedule for 9 am and stop and pick up a bagel and coffee on the way. I get hooked up, have my breakfast and read the paper, then work on a needlepoint project or read.

Good luck, hope it works for you!!

Meesh
Posted 4/10/2009 6:17 PM (GMT 0)
Hi,  As I've written here before,  my son is on Remicade, and had his 5th infusion Mar. 20

Due for his 6th May 15th.  He feels soooo much better,, Goes a few times in the morning, then is good all day...no pain,,no blood or mucous.  He also started taking the Vitamin

called  Forvia and has more energy and feels better all around.  He is off of Asacol totally, and tapering off 6-MP...only 1 a day till next week, then none.  The Remicade has healed his left sided colon it seems.  His doctor likes to say that Remicade is an immune

modulator...and it seems it made my son's immune system more normal.  He got one cold this winter, as did my husband and I, and he is fine now.  He doesn't get paranoid over every germ like he used to, but does wash his hands alot and is generally a little more careful and trys to stay away from sick people. 

All you can do is try it out,,,and hope it works for you.  Good luck.

Posted 4/11/2009 12:03 AM (GMT 0)
I have had 3 infusions and it has worked wonderful! I have had colitis for over 10 years and managed quite well, then this past Nov/Dec I was hospitalized for over 2 1/2 weeks because I could not get it under control, they tried everything and then I was told about Remicade (I had never even heard of it), after the first infusion I started to feel better, and I can say now after the 3rd, I feel pretty good, actually great.

I came down with what they thought was a bad lung infection due to the Remicade in Jan/Feb, but after lots of tests, turns out it was actually all related to my colitis not the remicade. The longer I am on the remicade the better my lungs should get as well.
Posted 4/11/2009 12:35 AM (GMT 0)
I get my first infusion on Monday...I am so excited, I cried a little.
Wish me good luck!
Posted 4/11/2009 12:55 AM (GMT 0)
     I have heard so many pros and cons about Remicade it isn't even funny.   I've had UC for over ten years.  At the present I am in remission.  I suffer flares every two years or so with each one getting worse than the previous.  I've been on 6MP for over five years.  Last year I suffered the worse flare since being diagnosed and had to be hospitalized for ten days.  My GI doctor has been pushing Remicade for the past two years.  I did a lot of research on this drug and decided it definitely is NOT for me.  I was exposed  TB years ago and it is dormant in my system.  Remicade could activate it and cause fatal results.  My GI's associate is against me taking it too.  Today I spoke with a woman whom I haven't seen for a few years.  She suffers with RA.  The last time I saw her she spoke of Remicade as being her miracle drug.  Today she had a whole different story.  She had a very bad reaction after being on Remicade for over a year and almost died.  That was enough for me to hear.
Posted 4/11/2009 1:25 AM (GMT 0)
Peety, I hope, hope, hope Remicade works for you! I know you'll keep us updated as to how it's working!
::fingers crossed::
Posted 4/16/2009 10:27 AM (GMT 0)

Remicade almost killed me.  For Real!!!  I was in a wheelchair from it.  Incredible pain!  Be Careful PLEASE!!

At first it was a miracle, then slowly started the side effects crept up.  Dangerous stuff.  Dr.'s don't know enough about it, they'll just keep medicating you to cover all the side effects of the side effects.

Posted 4/16/2009 1:45 PM (GMT 0)
New member and never personally been on Remicade, but was on Humira for close to a year. At this time the Docs (Rheum &GI) decided Humira was failing and Rem would be the next choice... Have been off Humira now for 8 weeks, which is the length of time suggested to have in between the 2 meds. After 4 weeks being off Humira I started experiencing numbness and tingling in my left arm. After symptoms worsening and an MRI I was "diagnosed" with MS at an ER due to the lesions found on the scan! I am now dealing with the MS Center of ATL. The neurologist there stated the lesions are both new and old so this may have been occuring for some time, and that a spinal tap would be needed for a true MS diagnosis. The results have come back as normal. My appt. with the neurologist to discuss what that means is today. My guess is that it is directly related to the Humira. I found this site by search engine of humira and neurological side effects. There are tons of postings on the Chrones forum of these MS type side effects, but they most are Remicade related rather than Humira. They are both TNF blockers and evidently have these types of side effects. BE AWARE of this... NO ONE asked me if I had MS in my family, etc. until AFTER I began suffering from these side effects. Only then did my GI state that Humira had been linked to neurological issues. My biggest question looming now is will it reverse? It may not affect everyone this way, and I certainly understand that it has been a miracle drug for many, but patients need to know that these things can occur as they consider their options. Best wishes to you all!
Posted 4/16/2009 1:46 PM (GMT 0)
Yeah, it almost killed me too, but I still take it. It helps enough with the UC symptoms so that I can live a fairly normal life. And when I did get so very ill due to it, my immune system was seriously compromised- much more so than it is now. After my bad experience with it, it was frightening to try it again. And every time I go for an infusion, I get a mini-panic attack, thinking "What if this time it really does kill me?". But... so far, so good. I don't know what to tell people thinking about this drug- I don't even know how I made the decision to continue with it, to be honest!

Posted 4/16/2009 2:04 PM (GMT 0)
I have been on Remicade for 4 years and it has really given me my life back. I am able to go out with my husband for dinner and do normal things. I do get a reaction each time I have an infusion, but the nurse and I have worked out a great procedure. I get lots of drugs before the infusion and just before the reaction begins. I get through the infusion in normal times. I am tired for the next few days and I find my skin has become very sensitive to creams/lotions, even a rough seam with irritate me. I now wear softer, smoother materials. I also take a Methotrexate shot every Friday evening in order to help prevent antibodies from forming. The Meth makes me somewhat queasy for a few days. But overall, the Remicade has been successful for me. I understand and can cope with the side effects. I am glad I gave it a chance.

Good luck.
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