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Remicaid, thoughts?

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Ulcerative Colitis
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Posted 7/13/2009 6:05 AM (GMT 0)
I've been flaring since around September of this past year, and I've gone through three treatments with Prednisone, all of which have helped for a bit, but then everything just goes back to normal. I've been pretty lucky with having diarrhea only now and then, but in the last few days it's gotten really bad. I haven't changed my lifestyle any, my meds have been the same, but all of a sudden I'm feeling very very sick. I'm leaving for college in a few weeks and obviously stress could have something to do with it, but my doctor is very concerned and offered Remicaid as a solution. I'm a little hesitant about the IV injections, especially with leaving home very soon, and I was wondering if anyone would like to share their experiences with it. Did it immediately soothe your flare up? Or did it take as long to feel better as it does with Asacol, or Lialda?
Posted 7/13/2009 12:34 PM (GMT 0)

Hi Twirlygirly,

So sorry to hear your suffering at the moment...I saw your entry and just had to reply. I have AS and am myself going to start Remicade treatment in a month or so on my return from an overseas trip.  In the past year I've been given everything! At the moment I'm on Mxt and humira injections along with many other meds for different conditions.  I've posted several notes on this site and had quite a few responses that support this course of treatment, which excites me alot... smilewinkgrin   I've not worn enclosed shoes for 15 months, limp, had two falls due to weak right foot and have now been given a disabled sticker smhair   I look forward to starting Remicade and seeing if I too will have good results, as the others have suggested. So don't be afraid = as my GP told me last week when he read the letter from my specialist "you've tried everthing else, what have you to lose?"  Most people have said that if has been effective from sometimes the second course :-) It could be just what you need and as the IV injections are only every 4/6 weeks much more managable that injecting yourself every two weeks. The side effects I don't know and have been advised not to read them all, and again as I don't have any other choice now anything is better than nothing.

I hope you start to feel better soon, this is a great place to air your thoughts and feelings if your feeling down and just over the whole thing. Hang in there. Here's to a good day tomorrow.

Peggy Baggins

 

 

 

Posted 7/13/2009 12:49 PM (GMT 0)
Hi Twirlygirl!

I'm not trying to push you one way or the other but there are many of us who just started the infusions and did get fast relief. Also, the IV infusions are easy breezy and you can get some good rest. Good luck with whatever you decide!!

https://www.healingwell.com/community/default.aspx?f=38&m=1519113
Posted 7/13/2009 1:46 PM (GMT 0)
I have had 2 infusions and will have another at the end of the month. The past few days, I am starting to get better, but it has taken a while. However, I am also tapering prednisone at the same time and that always makes me feel worse, so it's hard to tell how much the remicaide is helping since I am not getting worse this time.
Posted 7/13/2009 2:29 PM (GMT 0)
I had my first Remi treatment last Friday.  I don't go again until July 31st for my second round.  I have noticed that my diarrhea has decreased though.  I had no side effects from the medication.  I was too, and still very concerned about all the side effects they tell you.  I guess you just have to do what you feel is right for you.  I just know I am not ready for surgery and my doctor felt like right now this was my only other option.  Good Luck!
Posted 7/14/2009 6:47 PM (GMT 0)
Thank you all so much! I am seeing the doctor on Thursday, so I'll probably learn more about it then. If this were at the start of my diagnosis, I'd be a little more scared, but since I've had all sorts of needles poked in me since I've started this journey, a monthly IV wouldn't phase me.
Posted 7/14/2009 7:00 PM (GMT 0)
I have had 3 remecade infusions, no side effects, can eat again, no blood, no direhea, feeling normal, I think, its been along time. Have tapered to 1 pred a day. I have started getting out and going place's. So for me Remecade has been wonderful. The I.V.'s are so simple I actually slept thru one of them. But what ever you decide I hope you feel better and it works for you
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