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Remicade experiences

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Crohn's Disease
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Posted 4/17/2010 4:05 PM (GMT 0)
Hi all, I have just had back my MRI results and have a fair bit of active Crohns and strictures from past flares which makes surgery not the best option at present.  I am starting on Remicade soon and would like to know others experiences of it (good and bad).  currently taking Pentasa, Pred and Methotrexate but not much success so far.  Thanksconfused
Posted 4/17/2010 6:52 PM (GMT 0)
I was on it for 6 & 1/2 years until I built up a tolerance to it. Loved it. Had 2 kids and while taking it. It was a real lifesaver for me. If you search the posts you will find a lot of info on everyone's experiences with remicade. The only bad thing I can say is that it caused me to have chronic sinus problems, but that's nothing compared to what Crohn's can do.
Posted 4/17/2010 7:49 PM (GMT 0)
Saved my hubby from surgery. He's now been on it for 2 years. He gets pretreated with benedryl and 40mgs of solumedrol, and after the infusion he has fatigue and flu like symptoms (controlled with tyelnol) for about 24-36 hours, and then he's fine. It's been really good for his crohn's, and he has had no other side effects to speak of.

I hope it works for you. It has been my husband's miracle drug so far, and I hope it'll work for him for a long long long time to come.

PV
Posted 4/17/2010 8:08 PM (GMT 0)
It was great for me while it lasted. I was on it 2 years or so and lived absolutely symptom free while on it. I didn't do any premeds and had no side effects from it.

After 2 years, I did begin to react to it and my GI said I had built antibodies to it. So, we moved to something else.

Good luck!
Posted 4/17/2010 10:11 PM (GMT 0)
I had 1 infusion worked great... second time I had an anaphylactoid reaction. :-(
I was one of the first ones to use Remicade as well. I'm in the books! That was 10 years ago.
Posted 4/18/2010 10:41 AM (GMT 0)
I was really worried about being put on the infusion, but it has saved me from surgery and I could not go through that again...I Have had some unusual symptoms, like feeling manic afterwards for two weeks but they lowered my dose just a little, infused it over 5 hours and it has all helped. If it works and mine took a while it is worth it. I had ongoing pain even when well, but its gone!!! Good Luck we all need a bit of well time
Posted 4/19/2010 2:01 PM (GMT 0)
Thanks everyone for your experiences its good to hear from those who 'know'. x
Posted 6/15/2010 3:55 AM (GMT 0)
I have had Crohn's since I was 14 years old. Most of my life I had the flare-up (I call them mini contractions) sypmtoms. I am now 30 years old and after my first daughter I had developed a fistula between the vag/rec and it was ruining my life for 4 years (2 failed surgerys and 5 misscarriages) Until I was finally put on Remicade. It took only 4 doses for my fistula to completely disappear and I actually got pregnant! Remicade is my miracle. I am now 35 weeks pregnant and feel great! So after 4 years of hell and had tried all types of meds...I was in shock on how well I responded to Remicade. Keep your mind opened and give each time to get used to your body. Good Luck and you are def not alone!
Posted 6/15/2010 6:09 AM (GMT 0)
i've had my 1st 3 loading doses but have yet to notice any real benefits...next infusion is 4 weeks out...
Posted 6/15/2010 3:48 PM (GMT 0)
I loved it. But it didn't love me. Actually I built up antibodies and had to stop infusions. My symptoms were mainly debilitating joint pain in my knees, wrists and fingers, so much so that I was barely able to walk. But it did wonders for my CD!
Posted 6/15/2010 6:39 PM (GMT 0)
I was on Remicade for over 3 years with great results until I built a tolerance recently (over the past few months).
Posted 6/16/2010 3:28 AM (GMT 0)
3 years every 8 weeks no side effects that I know of. Good results on subduing joint pains, ok on the rest.
Posted 6/16/2010 3:46 AM (GMT 0)
I was feeling very good on it. But on my 4th infusion, I went into anaphylactic shock. Shame...
Posted 6/16/2010 5:15 AM (GMT 0)
yikes- out of nowhere? that's what scares me about this stuff.
Posted 6/16/2010 5:24 AM (GMT 0)
I STARTED REMICADE OVER 2 YRS AGO AND WORKED GREAT FOR ME UNTIL NOW!! :( GOOD LUCK!
Posted 6/16/2010 12:25 PM (GMT 0)
I've been on it every 8 weeks for the last 26 months. I went into remission after about two months of receiving does. Fortunately, I've never experienced any side effects from it. I always feel pretty normal when walking out of the clinic afterward, if not a little tired from the antihistamine. Remicade likely saved me from having a resection surgery.
Posted 6/16/2010 2:15 PM (GMT 0)
Thanks to everyone for the replies its good to have an idea of what to look out for in terms of side effects. Still concerned that it won't have any effect on the strictures that I already have - would love to get off the low fibre/low residue diet.
Posted 6/16/2010 3:17 PM (GMT 0)
I had my first infusion last week and having a second one next week. I've noticed changes within a few days. My joint pain is much more tolerable and my bowels are more regular. Only side effect I noticed is that I had a headache for a couple of days afterwards. And the first day I couldn't sleep but the next day I just felt off. No energy. Someone mentioned that the cortosteroid might have kept me wired and when it wore off I was exhausted. Makes sense to me.
Posted 6/16/2010 10:31 PM (GMT 0)
I have been on Remicade 3 times. Once for 3 doses, the next time for a year, and the time after that for 4 years. It always worked great for me when I restarted, I always insisted to be premedicated with IV Benadryl and never had any issues. The time I was on it for the 4 year stretch were great, literally no symptoms at all and ate whatever I wanted, including movie popcorn! Yum!
Posted 6/16/2010 10:40 PM (GMT 0)
I start rem next week, I'm on the remistart program, but am concerned forthey told me it was only good for 8 injections, anybody else in this program and anybody had issues with this program

Posted 6/17/2010 1:31 PM (GMT 0)
I knew i could count on you dawg for information, that's why i asked that question, hopeing you would respond, you need to be on hw payroll, just kidding, I know you would give this information. You certainly helped me in filling out my ssdi forms, will always appreciate that, big time.

Posted 6/17/2010 8:24 PM (GMT 0)
Hi only managed to get 1 infusion as I got a reaction on second dose, I felt the benefits almost straight away I would go back on it tomorrow if I could. Bev x smilewinkgrin
Posted 6/17/2010 9:34 PM (GMT 0)
thanks dawg for info, thats pretty funny about peter being in your back yard. ssdi sent me to a shrink, and he asked me what symptoms I had that caused me to not be able to work, I started to tell him, but i told him i wasn't sure where to start, he rattled off syptoms, starting with the big D and he continued to cramps, then gas cramps, and so on, then he told me his father had cd so he grew up with all these syptoms that we have, so he was a perfect dr to send me to. State disability sent me to internist, and he told state that I was in deed sick, so I'm still waiting. It's really sad that my family has to suffer because I am. that makes me more sick than my crohns. i have to end this it takes me to a place that is hard to deal with on emotional level

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