Remicade third infusion

I just got my third infusion with Remicade , still no noticeable results from this stuff.
All the symptoms still hanging out with me. Anyone else have any delayed results from this med?

PS - I was also taking Methotrexate at the same time. So that probably helped with the initial decrease in my symptoms during the earlier stages if remicade. I'm guessing it would have taken me far longer to see a difference without both meds.

Well - for me when I first started Remicade I just ate whatever I wanted - So Pizza, and well everything and anything. Although the pain, bleeding and 20-30 trips a day subsided fairly quickly - and cut down to say 2-3 times a day - Things never quite felt right. Loose stool, with mucus being the main issue. So I had to look at other options and that's when I came across the SCD Diet. It was recommended to me by a friend at work.

SO I took the plunge. Essentially it cut's out all grains, starches, dairy (with some cheese's and home made yogurt being an exception) and refined sugars.

There's lot's of resources about it on the web - http://www.breakingtheviciouscycle.info/ being the best starting point.

Now - I must say, that diet on it's own has never been able to keep me out of a flare - but somehow, the combination between diet and med's was like a night and day response for me. Normal stool, once a day, no pain, mucus or bleeding. There's a bazillion people on here that will tell you it helps, and equally as many that will tell you it didn't. Its sort of one of those, you just gotta try, see, and hope things. It's extremely difficult to follow during the first few weeks. Actually, based on others that I've helped get started on it - most don't make it through the first week. Your body does some weird Sh^t at first. I find it funny actually, when I look back now and think about it. There were a few days when I thought I was getting worse - but the main very noticeable difference was zero pain and discomfort when going to the bathroom so I thought to myself, something it different... I'm going to stick through this a little longer and see. Then after a few more days I woke up one morning and well - I didn't need to run to the bathroom first thing. In fact I went out to get a coffee without even thinking to hang around for a bit and "see" if I would need a washroom. From this point on I was sold. And after that everything got better. It had probably been two years since I was able to just get up in the morning and go somewhere... This was a game changer for me.

After a few months on the diet I did some experimenting - and added "illegals" as their referred to - and well within a day the loose stool and mucus returned. So back to being strict I went and that went away again.

Everybody is different though - and everyone experiences different responses to both diet and medications. That's the most frustrating part for all of us on here.

I will say this - The change in diet gave me a new look on life. It caused me to realize just how much crap I was eating, and more so, how much sugar was part of my diet before. When I started to eat healthy, I started to feel better, and then I started to want to exercise, which in turn made me want to just eat even healthier!

I'd say start by reading about it on the link above - then search and read through some of the posts on here as well as any other boards.

Also - I have Crohns-Colitis. So from what I understand from my GI, it's UC but throughout the entire Colon.

My problem was that I had to strop Remicade as eventually I had a reaction to it. I decided to come off all meds cause I figured I was "cured" and I would just continue to eat healthy and exercise... then whamo... after a few years it all came back. So this time around I have learnt my lesson. Diet (SCD/Paleo), exercise and medications is what I am sticking to. Med's - even maintenance dose being the important part to me.

Anyway - it's always a lot to explain.

Have a read through this thread https://www.healingwell.com/community/default.aspx?f=38&m=2624533

It might help answer some of your questions and provide you with some other people you could talk to about it.

All the best and feel free to ask away with any questions you might have after doing your research!

Mark

What else are you on other than Remi. Luckily for me I saw results immediately, but it could take up to your 5th to see results. It also helps if you are on immunosuppresants, which lessen the chance if your immune system forming antibodies to the Remi.

They say it could take up to five infusions to see an improvement. I went for 8 infusions with no change and stopped it because I was getting worse.

Tuch said...
Bye bye UC,
Where did you have the surgery done?

I live in central NJ and I had my surgeries done at Jefferson University Hospital in Philadelphia.

You're welcome. Yes, Philly and NYC have really terrific hospitals. I was really impressed with Jefferson.

I have heard the Mayo clinic there in Jacksonville is top notch. Best of luck with your treatments.

Thanks for your help all,
I guess first step is to find a new Gastro this week for a second opinion. Time for a change.
Thanks again