My first post, my worst flare and Infliximab (remicade).

Hi Everyone! I've read these forums for ages but never posted. I was diagnosed with Ulcerative Proctitis roughly 4 years a go. Controlled and in remission a few months later with the use of Prednisolone tablets, Pred Foam and Messalazine. Over the 4 years I'd get what I call flares... Although they seem mild now. Just 3 or 4 bathroom visits and stomach aches. I could usually get these fixed within two weeks hitting the Pred Foam.

Fastforward... and after being on a course of antibiotics for a nasty infection my Proctitis starts flaring. I hit the pred foam for two weeks to no avail, increase my messalazine also to no avail and things go from worse to worse. The flare is different this time. It hurts higher up and by now (probably a month later) I'm house bound, hitting the bathroom 20 times a day and just passing blood sometimes. I'm called in for an emergency flexible sigmoidoscopy where I'm told it's a severe flare up of Ulcerative Colitis that has affected my entire colon. I'm sent away on high dose prednisolone. 3 or 4 days pass and there are no signs of improvement so I call the hospital and I'm admitted for intravenous steroids. The Gastro suggests 3 days in this and thrn try the oral prednisolone again. 3 days pass, I come off the IV and start the tablets and even though the gains were very small on the IV I start flaring up again. The Gastro has now decided to put me back on IV steroids for another 3 days but this time he wants to kick things off with Infliximab.

This is where I am now. It's monday, just finished IV steroids, started prednisolone oral and I had my first dose of Infliximab on Friday. Yesterday things looked like they were improving but today, not so much. I keep reading reports of people saying how much of a miracle Infliximab is and it worked in 24 hours. I guess I was hoping for that... As naive as that may be. I just really needed some results.

Sorry for the long self indulgent post... Is there anyone else in a similar position? Man, hospitals are depressing.

Post Edited (This Charming Dan) : 1/28/2015 4:47:17 AM (GMT-7)

Remicade was not an immediate relief for me. Don't expect it to work overnight. Like you, I hoped for the same thing, but it took around my 4th infusion before I was back to normal.

I had my second colonoscopy in October of 2013 and my doctor said it was one of the worst he's ever seen with how fast and severe my UC spread since being diagnosed in February of 2013. Like you, mine also affects my entire colon. I had my 3rd colonoscopy December 2014 and it was crazy to see the difference in just a year on remicade. It wasn't perfect because unfortunately I was in a little flare (I blame the holidays and starting school again), but it was such a remarkable difference.

Stick with the remicade if you can. It takes time to heal.

Thanks for the replies. Blood tests have shown that the inflammation has come down A LOT. The Gastro told me the inflammation was at 107 when I came in and it's down to 7
now. He's confident the extra 3 days on intravenous steroids plus the first Infliximab infusion is going to be enough to enable me to get onto oral prednisolone and hopefully leave hospital with this flare showing signs of being tamed.

I'm not as positive as him. Thanks for reading and replying! I'll keep you all updated. Dan x

Everyone is different, but I was a in a similar boat to you and ended up needing surgery. Not immediately. I had another 18 months to go of steroids, relapses, hospitalisations, and more steroids first.

Frankly I don't trust doctors' reassurances in the slightest. But that said, like I said, everyone is different. I hope the Remicade kicks in for you, and you go into a genuine remission (not a fake steroid-induced one). Best of luck.

Infliximab (remicade) saved me from a year of prednisone dependence, and multiple accidents a month. I noticed a positive improvement a week after the second infusion, a bigger improvement a week after the 3rd infusion, and steady improvements at each additional infusion. I'm now in a symptomatic remission and I've been of pred for a ling time now.

What are they dosing Infliximab at for you? If you're in the hospital then a 10mgs per kilogram dose might be warranted. I'm at 5mgs a kilogram, the standard dose.

Good luck,

I hoped for the overnight amazing result too but I didn't get it unfortunately. In fact, I never saw much result from the medication :( Most people do so keep thinking positive and give yourself time to heal.

One thing I have noticed since starting Infliximab is really dry skin... At first I just put it down to living on a hot stuffy hospital ward for 8 nights and counting but with research it looks like dry skin is a side effect of Infliximab. Anyone else get that?

Just an update. They're going to do another flexible sigmoidoscopy to see what progress the Infliximab is making inside. Bloods showing inflammation is still down so that's good news. The blood has completely stopped but I'm still going a lot. Fingers crossed.

iPoop said...
Good luck, keep us posted on the results.

Thanks. Will do. I think the flexi will be tomorrow.

So. Had the flexi today. Not the results I wanted as it's still showing inflammation. Particularly lower down. They were hoping for the Infliximab to have shown a little progress by now. They have upped the prednisolone to 60, prescribed Aza (never had before) asked me to start using the pred rectal foam (this used to always work for minor flares) twice a day and also prescribed a salofalk enema in the hopes it'll help my symptoms... SYMPTOM! I only have one. I'm not getting any pain, cramps or bleeding just the darn toilet frequency.

My body has history of taking ages to heal/take to new medication. It's been like that since I was diagnosed with addisons disease back in 2000. With that in mind it still makes me want to hold out hope for the Infliximab as I only had my first infusion 7 days ago...

I'll keep you updated.

iPoop said...
Stinks you didn't get better results. But 7 days is hardly enough to give up just yet on remi. I tend to heal very slowly as well.

Often aza is given at the same time as remicade. It is an immunosuppressive medication that both helps treat uc, and also helps prevent antibody buildup to remicade. Aza takes several months to build up to therapeutic levels with in your body.

Aza lowers your bodies whit blood cell count. White blood cells are the immune systems attack dog, causing inflammation. The less white blood cells, the less uc inflammation you'll have, which improves your uc symptoms.

Good luck,

Thanks. That's a very informative post. I'll know who to hit up with any questions!

Just don't add to much fiber too quickly when flaring. Roughage against an inflamed colon is uncomfortable.

Glimmer of hope. I've secretly been worrying thinking "I'm going to need surgery" and it's been really getting me down. The surgeon consultant came to see me today and said that he doesn't think surgery is necessary. He said as the inflammation is pretty much all lower down its easier to treat - especially topically. He also thinks I can still hold out hope for Infliximab to do something as it can take a while to show results. He hopes that Infliximab along with extra prednisolone should kick it.

I sooooo badly need good results and good news. This hospital is sending me crazy.