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Remicade treatment question

Hello everyone,
I just have a question about remicade for anyone who's gone down that path before. I had my first treatment for uc not quite two days ago, and so far the only difference I've noticed is a strange side effect- starting yesterday, about a day after the treatment, I have much more mucous when I use the bathroom, sometimes that's all there is. I haven't really noticed a change other than that in bm's or urgency. I'm hoping that maybe it's a sign that my bodies healing and shedding what's inside me, but does anyone have any input?
 
J

jjs16

Guest
Hi nc bri,

I will be going for my first infusion this afternoon. I will let you know if I have similar results.

j
 

vickyoddsocks

wears odd socks
I had another infusion friday just gone, (found out it was my 17th!!!!) and the only side effect iv ever had is that i get worse i few days after, then get better.
X
 
N

nancy78

Guest
Just wanted to let you know that I has 7 tx of remicaid infusion and it was working for me but it was silently damaging my liver, I became ichy all over, my legs swelled up and I became dizzy. So just be carefull and listen to your body. Needless to say I am no longer on remicaid.
 
just an update- it's been a week after my first infusion and I think it's helped so far. I'm not totally symptom free, but after a brief bout of feeling a little bad in the morning for the most part I feel good and symptom free the rest of the day. Hopefully this lets me go completely off of the Prednisone (I'm on 15 mg a day). I didn't really notice any side effects at all, although the first couple of days afterward were up and down. So, I'll keep you posted!
 
I was on remicade for about a year and a half taking 10mg/kg (the normal dose is 3-5 mg/kg) every month instead of every 2 months because when I started it Humira hadn't been approved for Crohns yet and the other treatments weren't working for me. The medication was always well tolerated and gave me results within a day or faster. Stick with it as long as you can because it is a great treatment if you can afford the cost. Just be diligent getting blood tests and be active in your treatment with your doctor so you can minimize the risks of this wonderful drug.

Also, get off the prednisone ASAP, long term you will regret being on prednisone for any extended period of time. I hope the remicade lets you do this because in 20 years from now you will be glad you did.
 
Well, I thought I was improving with the Remicade.
Since I had the treatment, i've still had a problem with urgency, but at least it was confined to the morning and was only 1 or 2 times, so I could kind of plan for it. Today I had to go, as usual with quite a bit of urgency, but I spent forever in the bathroom, with a lot of straining, just a little at a time, you know what I mean. It completely wore me out and I feel very raw. I don't know what's going on with this.
 

Kev

Senior Member
Just a WAG (wild assed guess) but it could be that in swinging from bad back to good, the pendulum swung too far, and you are close to constipation, even impaction. you may need to counteract this by swinging your diet to more liquid and less solid foods for a while. A hi starch, low fibre, low fat diet CAN turn around and bite you by making you prone to constipation. if you're able to add a little more fibre to your diet, or concentrate on liquids for a while, it might prevent the 'straining' thingy.
 
I've always been on the constipated side which is why it took them forever to diagnose my crohns. I would recommend miralax(if you can afford it now that it is over the counter), higher fiber diet, or I believe my mom takes magnesium citrate in a formula called calm. Miralax is really nice, but you can't take it daily anymore because what used to cost ~$10 for 1-2 months now costs $15 for like 1-2 weeks (at least I can't as a student). The calm also works it just has an odd taste. A bit of it in warm water is a sort of bubbly tea.

Hopefully the remicade keeps you feeling well, its a great medicine till you have antibodies to it. The worst part of the medication other than its cost was really just how tiring an infusion day was. Other than that I felt great and I think with time you will realize how great the absence of pain is and hope you never have to go back.
 
Thanks Kev and Saidinstouch, I appreciate the replies. Maybe more fiber would be a good thing. Fortunately though since the last post I've really felt pretty good. Everyday I still have one pretty severe bout of urgency in the morning, but then I'm good for the rest of the day. My next Remicade treatment comes tomorrow, so I'm hoping for more improvement. I'm still taking the VSL#3 probiotic so it's hard to tell whats helping, but as long as I'm improving at this point it's all good.
 
J

jjs16

Guest
Hi nc bri,

I had my 2nd Remicade infusion yesterday, I think we're on about the same schedule.

I feel pretty good so far today, I woke up with a bit of cramping this morning this I think was due to the fact I had not pooped for quite a while. I went to the bathroom and felt better afterwards.

I went and worked out at the gym it went well and haven't had any urgency at all as of yet. I think it's working....hope so.

j
:) :canada_flag:
 
For you two just starting you have to remember that the initial buildup is just that...a buildup of the remicade in your body. While the results can be felt within even a few hours of your infusion, your earlier infusions take a bit of time to really reach their maximum potential. Once you are on the 8 week plan, life on remicade is great. Even on a 4 week schedule like I had to be until Humira was approved, I didn't mind too much.
 
Hi J, I'm glad that it seems to be helping you and hope that continues! Are you taking it for Crohns or uc?
Mine seems to help, except I still have one or two urgent times in the morning. And, it seems to take me forever to go, just a little at a time. As long as I make sure that I'm around the house in the morning then I'm ok! So, I guess I need to be thankful that it's not worse than that and hope for more improvement.
 
J

jjs16

Guest
Hi nc bri,

I have Crohns, I have been dealing with severe pain due to strictures from a resection I had about 28 years ago. Prednisone worked wonders but it's very short term due to the side effects. If the Remicade doesn't work I'll need to have some more surgery to resolve the issue. I feel great this morning, I hope we both carry on and get better each day.

j

:canada_flag: :hockey:
 
J

Jvstin

Guest
I did remicade for about a year, then it stopped having an effect. the next step up is Humira, but for now good luck with remicade. bring a book or something.
 
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