Considering Remicade - Want to know your experiences with it

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Danu

Danu

Joined
Jul 24, 2012
Messages
51
Hey everyone,

I've been diagnosed with UC/crohns colitis for about 6 months and have a fistula with a draining seton. I'm currently in asacol and though it has worked ok my symptoms are flaring back up. Because of fistula issues my dr wants me to consider remicade. I wanted to put it off because, frankly, it scares me a bit. But having to have surgeries due to neglected symptoms scares me more.

What are your experiences with it? These stories of lymphoma are really scary. But my fistula hurts everyday. And when I have D and stomach pain, loss of appetite, fatigue, etc, it really makes me want to go for it.
 
Hi Danu - I wish I could help but I have never been on Remicade. I failed Humira and am likely starting Cimzia soon. There is a whole sub-forum on Remicade. I suggest that you read through the posts in there, I read the Humira one for the same reason and it really helped.
 
I took Remicade for about a year with no serious side effects although I stopped and switched to Humira because it stopped working for me.
 
I was on Remicade for a year and it was seriously like a miracle drug. I had no side effects (which was unusually for me, the queen of the 2% side effect). It stopped after a year and I had to switch to Humira.
 
I took Remicadee for 5 years and it was a wonder drug for me...I had to stop taking it that past August because I developed a condition called "Opic Neuritis", which basically means I started to have pain and dull vision in one of my eyes...something about the optic nerve being inflamed. Since Opitc Neuritis is a rare side effect of Remicadee, I had to stop.

Although myself and others had amazing success with Remicadee, I also know people that did not get any relief at all from it. I wish you the best, I really wish I was able to go back on it, I have been in a steady decline since they pulled it from me:(
 
Remicade worked well for me until I had an allergic reaction. Had to stop using it after that....

A lot of these medications seem to work well for a short period of time then they stop working....
 
Remicade is a miracle for my son.
Hopefully we can keep it working for quite a while.
No real side effects here either
 
Remicade has worked well for my son although he was unable to reach full remission with standard dose so we are tweaking the dose and schedule as well as added Methotrexate. He has had no side effects either.
 
I have been using it for almost 5 years now, and like many here, it has been a miracle for me. I have had crohn's for 25 years, and the last year and a half has been (knock on wood) remission. I am now enjoying the best health that I have had since being diagnosed. Remicade is responsible for most of this, and imuran took care of the last bits. As someone who has had 6 surgeries due to crohn's, I do think it is worth trying, especially if you have a good medical plan to help with the costs. It literally has been a life changer for me.
 
I say go for it, I resisted starting humira 6 months ago and my fistula is much worse and had to get surgery. Currently 1 week on humira too early to see effects but still very painful a month after surgery.
 
Remicade saved my life. If i hadnt responded so well they would've operated but they didnt think i would have survived the operation.
It worked really well but unfortunetly had anaphalctic shock so couldnt take it any longer.
Try not to worry yourself about it as you are monitored closely while on it. It most certainly is life changing for many.
 
I've been on it about year..it's a miracle drug..I think I'm in remission..I see my GI dr. in a couple weeks..but so far so good..I'm praying it doesn't stop working...I too seem to respond well with meds, but they don't last.
 
I have had 6 (?) infusions now- I have had no side affects since they added the hydrocortisone right before they hook up the Remicade. Just tired from they other
pre meds Benedryl and Zyrtec. I would also taking Tylenol for a few days after. That
seemed to help wth the headache and bodyaches I had the first time around.

Unfortunaly- I dont feel any improvement. But, we all react so differently, as do some of
our symptoms, that I would not take any of that to heart. You could do very well with
it. After talking to the other people getting Remicade they have all had great results. Most right away.

Good luck and keep us posted!


Lauren
 
@Tots - keep up with it for a little bit more. I didn't notice too much for the first few infusions, but then I just realised that I was better. For me, it wasn't as if someone flipped a switch, I just didn't really feel sick anymore. Bowel frequency dropped, pain disappeared. It sort of snuck up on me.
 
Not everyone needs pre-infusion meds, Bond. Some clinics require it, but others wait to see if you have a reaction and need prednisone/Benadryl/Tylenol, etc., before infusion. I was lucky and didn't require anything.

I never had any bad effects from Remicade other than feeling sleepy on the day of infusion. It never quite got my UC into remission, so after a year it was discontinued.

Good luck on your decision.
 
2thFairy said:
Not everyone needs pre-infusion meds, Bond. Some clinics require it, but others wait to see if you have a reaction and need prednisone/Benadryl/Tylenol, etc., before infusion. I was lucky and didn't require anything.

I never had any bad effects from Remicade other than feeling sleepy on the day of infusion. It never quite got my UC into remission, so after a year it was discontinued.

Good luck on your decision.
Click to expand...

Oh wow really? I never had a reaction either in all these years, but they still make me take them...maybe thats why ive never had a reaction? There was one clinic in ATL I went to a couple times that didnt require it. They had a person react that never did before. They said it was because she took her remicade 2 weeks late that time :confused: I personally dont mind taking benadry, claritin, and zyrtec each time to be safe.
 

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