Remicade effectiveness

Hello everyone.
Thank you for taking the time to look at my post.
Long time lurker but decided to finally seek your expertise since I am basically at a loss as far as what to do.

I was diagnosed with Severe Ulcerative Colitis about five or so months ago after originally being diagnosed with Ulcerative Proctitis. I had to be hospitalized 11 days and put on a feeding IV. The Flagyl antibiotics and super high Prednisone IV's took the life out of me. Missed Christmas and New Years at the hospital as well as losing 30 pounds.

My first GI decided I needed a more specialized GI so he washed his hands and off I went to specialist further away from where I live...
The new specialist had me tested for the usual lactose intolerance and celiac disease. I ended up having lactose intolerance which of curse limits my diet not to mentiony love for cheese. Celiacs came back negative but that's a tricky one to accurately diagnose.

The new GI put me on high dose Prednisone and Lialda x4. I never reached remission. The stubborn BMs never got firmness. Blood and mucus was present or basically in overwhelming amounts many of the times. I was reaching mental and physical lows I never thought I would reach.

I have attempted diets, homeopathy and probiotic experiments to no success. Now the GI has decided to put me on Remicade, a drug that has some of the scariest side effects I have ever read. I was made to research and understand Remicade side effects like a Bible and only then allowed to decide if it's worth the risks.

Since it's basically Remicade or having my colon removed I decided I quite liked not having any parts removed and went for Remicade.

What I would like to know is how well this near last resort drug has worked for you guys? I'm on my second infusion at a 3 hours drip and I'm not sure if its going to do the trick. Does it take a lot of infusions to see an improvement? I'm hoping it's too early to make a judgement. My Prednisone is on a taper dose. I'm not sure the Lialda does anything but what's the alternative? I just want to see a glimpse of hope

May I ask you how Florastor gave you trouble kind Sir since I am also not finding it useful at a dosage of two a day?

Sorry to hear your ordeal, stay positive. Remicade made a big difference for my son. I do want to make you aware that some people can be allergic to Lialda and ASA-5 drugs wherein these drugs cause UC symptoms (diarrhea or bloody diarrhea). And if you are moving to Remicade, you can afford to stop Lialda as it didn't bring you to remission. I would try stopping Lialda, complete your remicade loading dose. You should see improvement after 2nd of 3 loading doses. Wish you the best!

Thank you for the extremely helpful reply iPoop. I ran out of Lialda coincidentally with BV's suggestion to take my self off it 2 days ago and my last BM was the firmest I've had in... Forever! I wonder if I should be worried about taking something to replace it? Hoping this lasts!

Post Edited (DeadKennedy) : 4/25/2015 4:35:20 PM (GMT-6)

It wasnt suggested by my GI.

remicade never did anything for my colitis. I am on entyvio now and things are calm but i don't know if it's from the entyvio or form the course of prednisone i recently wrapped up.

Hi DeadKennedy, sorry you have to be here....

It can take time with biologics, I'm on Humira and it took some time to kick in but it did put my crohn's colitis (crohn's affecting the colon) and my proctitis (CD affecting the rectum) into remission, all inflammation gone, just a bit of scaring in my rectum.

Funny thing was, although my GI started me out in the usual shots every 2 weeks I was still not feeling much better (still lots of frequency and urgency) so as they were rolling me into the room to get scoped to see how things were doing inside, I told my GI I still felt unwell and asked if he would up my Humira to once/week, he agreed (this was just before I was scoped) then I went for my follow up to get my c-scope results and he informed my that in fact (even before upping my Humira for me to once/week) all inflammation was gone just some rectal scaring left behind...he concluded it's my IBS (that he suspected I developed 14 years ago on top of having crohn's) that was causing my grief...he kept me on my weekly shots and referred my to a dietitian and counseling to help me with my diet and my emotional state due to stress and diet being 2 huge factors for IBS.

Prednisone comes with it's own scary short and long term side effects so I don't know that biologics are any scarier...pred stopped working for me after a handful of times being on it in my 24 years of being sick with crohn's, so I wouldn't worry about possible side effects of biologics especially since you're on pred anyway. Besides which, pred is only a bandaid med whereas biologics are actual meds that can heal up IBD and bring on remission so considering the difference between the two and the serious long terms side effects of pred, I wouldn't worry about the biologics, the possible side effects of biologics compared to very common side effects of pred makes biologics a much better med in my opinion and the main reason I've suffered for 23 years before finding remission was because non of the traditional oral meds worked for me I was either allergic or became non-responsive (to prednisone).

I've been on Humira for over a year now and the worst side effect I got was horrible headaches but a member here (ks1905) suggested I take an antihistamine to aid with the headaches and I'm happy to say that it works!! So no side effects for me on Humira anymore. I see my GI in May so we'll be discussing if I will need to bother staying on weekly shots or if I can go back to biweekly since obviously I was already healed inside before I even increased my Humira shots.

It takes a lot of patience waiting for meds to kick in and I honestly never though the day would come for me...granted this miserable IBS is taking away from me being able to enjoy my remission with my IBD but it's just sadly the way it's worked out for me...now I have to battle this IBS and keep hope that my CD will continue to stay in remission for a very very long time so I can finally/hopefully feel normal again.