INTRO:
My name is Jamie, I’m from Dublin, Ireland and I was diagnosed with Ulcerative Colitis in September 2011 and since then been trying to find something to kick the crap outta my symptoms.
SYMPTOMS:
last time I was just starting to get worse, but since then things have taken a turn for the worse.I was put on a course of oral steroids, 40mg tapering which literally had no effect, my doctor got worried.
I thought the next step would be azathioprine and steroids, but that’s when my doctor told me “we only give that to people who are well, it wont make you well, it’ll keep you well.” which wasn’t so re-assuring.We agreed to do nothing for the moment, but then a week later my symptoms had progressed aggressively.
doing nothing and hoping for the best was no longer an option.After a lot of hard thought, I decided that Remicade was our next course of action.
I was tested for TB the same day and within a week I was sitting in the infusion room.
This has literally just all happened so incredibly fast I don’t even know what to make of it.
Remicade was something I didn’t want to try, ever! and never wanted to hear the word being used for at least 5 years. now I’m worried that the treatment might not work, it’s early days yet, I only got the infusion 3 days ago, but I’m starting to feel slightly well again but that could be the steroids. (back on 40mg, tapering by 5mg every week)
This is what I need from my fellow colitis type people who are on Remicade.
How long before you noticed it started to work/ did it work at all for you?
Any side effects I should be worried about?
How it affects your life (eg. what can’t you do because of infusions? does infusion dates mess up your plans ect..)
Where I want to Be in a Year:
well.
that’s all I want to be.
Colitis Medications:
Prednisone 40mg tapering by 5 every week.
Mezavant XL (Lialda) 4800mg daily
Remicade 5mg per kg of body weight.
written by: jamieislame
submitted in the Colitis Venting Area
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GREAT SOURCE of REMICADE INFORMATION:
iHAVEUC 35 Patient Remicade Survey – READ MORE (completed Oct. 3, 2011 by website users like YOU!)
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I’m From Dublin, Ireland
Back in November 2010, I noticed some changes to my bowel habits.
Before this, my bowel motions were pretty much once a day, normal motions, but on November 5th I started to get looser motions, which became more frequent, at the start I thought this was absolutely nothing to worry about, and within 2 weeks it sort of returned to normal.
Jaime–i have been on remicaide almost over 2 plus years now and have not had any side effects or negative issues because of it–seems like it starting working after first 3 – 4 weeks and the second infusion was even better–so be patient it may take a little while but, for me anyhow, well worth it! you may experience a little discomfort like fatigue or slight headaches a couple of days after the infusion but it goes away rapidly. Have not noticed the infusions being much bother-actually got to where was looking forward to them–hang in there!! footnote: my UC caused me to give up my beloved coor lite and i now drink guiness (it really is good for you!) best of luck to you
Jaime – I’m in a similar situation. Steroids were not getting me out of my flare, even after five weeks at 40mg. I started Remicade about two weeks ago and go in for my second infusion tomorrow morning. I honestly noticed relief in two days. Bathroom urgency and number of times going to the bathroom has decreased dramatically. I probably go one time a day now (as opposed to 4 to 5 while on pred.). Still some bleeding, but much less. I also just felt better after the infusion – had more energy. I guess my body was no longer trying to fight the intestinal invader! I didn’t notice any negative effects after the first infusion.
I don’t know what to expect tomorrow as far as possible reactions. Well, I know what could possibly happen but I don’t know how I will personally react since I will now have antibodies.
As for life interference – getting an infusion or being out of commission for a few days every two months will be a vast improvement over my general UC. UC has limited my work travel and school progress thus far. Now I feel like I can actually do things again. I hope this continues and that life isn’t throwing me a(nother) teaser.
I started Remicade 9 months ago. It took 3 infusions for me to really get good and stable. I have had no side effects. I am not in remission but things are under control and much improved. I do eat a relatively low fiber diet. I usually go once a day. Some days I don’t go. Occasionally twice. My doc said I was one of his more severe or difficult patients so my experience may not be typical. I get the infusion every 8 weeks. It takes 3.5 hours total including wait time and I go to work immediately after. I do seem to get very sleepy and cold while getting the infusion.
Well hello there!!
Why were you so scared to go on remicade til at least 5 years from now? I’m currently on remicade and I got diagnosed in november. I’m on 60 mg of prednisone at the moment (again) and I’m getting remicade infusions every other month. As you can tell by me being back on the meds they didn’t work as long as had hoped. As for remicade, the first couple times (3 or so) I got the infusion I felt fine, AND it helped me get tons better. :) It seemed like it would work perfectly!! It really did help. BUT as I said, I’m not sure why (neither is my doctor) but I have already started having another flare. I don’t know if this is because the remicade already stopped working or what, I hope to have that figured out soon though. If you need someone to talk to or just want to talk at all about it or get an update after wednesday of what my doctor says about why I am having a horrible flare again, just email me. I’d happily share all the information i’ve come up with, with you. :)
autumnhaney1234@yahoo.com.
It’ll work, don’t worry. Plus, for most people it works for years and years to come apparently. As for side affects, I don’t really have any. I feel a little groggy afterwards and if i start falling asleep while getting the infusion i feel nausious and shaky but it goes away after about an hour.
Of course it messes with some plans every now and then but hopefully you are able to schedule around those things. Hope you the best of luck!!
– Autumn