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Ulcerative Colitis
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Posted 5/21/2012 6:24 PM (GMT 0)
Just finished my first Remicade treatment. Other than the side effects of the Benedryl things went very well.

I've been fighting this current flare since Feb of 2011 and nothing has been able get me back to remission.
First the Lialda was doubled to 4 per day, then started Humira. Finally concluded that wasn't working. My GI had me start 6MP a few weeks ago. Did well for about a week until the bottom fell out. Had a severe flare two weeks ago which landed me in the hospital for 4 days. Started improving on the IV steroids so they sent me home on 40mg of Prednisone. Things fell apart the second day out of the hospital. They gave me a prescription for the nausea I experienced from the 6MP, but it didn't help much at all. I won't ever take that stuff again. I know it's worked great for some people, just another way showing that we are all a little different.

I'm meeting with a jpouch.org approved surgeon in the near future just to talk about what might be the final step in my UC journey. I'm pursuing the Remicade and surgeon in a parallel path. Just in case the Remicade fails and I end up in the hospital with another severe flare I'll know what to expect if surgery becomes last option.
Posted 5/23/2012 2:52 AM (GMT 0)
Jay79,

Sorry to hear that you did not have success with 6mp. I also had my first infusion of Remicade last week. Things went well but during the last 15min I felt a heavy weight on my chest so they gave me the Benadryl. UGH! I felt so sick and nauseous! Luckily I was able to sleep it off and woke up feeling much better. My next infusion is June 4th. Did you feel any changes after the infusion? My bleeding stopped literally overnight but my BMs are not fully formed yet and it seems the frequency has increased slightly from 1-2 BMs to 3-4 BMs a day. I have been tapering on Pred for the past few months and I am now staying steady at 8mg until we see some positive effects of the Remi.

It sounds like a good idea to talk to a surgeon just so you are prepared and know what to expect. How are you feeling about things? Keep us posted on how things are going and hope you start to feel better soon!
Posted 5/23/2012 2:55 AM (GMT 0)
6mp can take quite a while to work. I know it took months for me to get into a stable condition after starting 6mp. I doubt it was doing much for you after just a week but I am not 100% sure. It sounds like it wasn't a great match for you regardless considering the side effects you were dealing with. I hope Remicade works well for you.
Posted 5/23/2012 12:30 PM (GMT 0)
ManhattanMama,

Yes, I've been following your thread about starting Remicade. My second infusion is also on June 4th.
They gave me Benadryl and Tylenol before starting the infusion, not sure why the Tylenol.

The only thing I felt after the infusion was being tired the day after.
I've been on 40mg of Prednisone since getting out of the hospital. Looking to start tapering by 5mg per week starting Monday. I was thinking of waiting another week, but the bathroom situation has greatly improved. This morning was very well formed with no sign of blood or mucus.

I'm really praying the Remicade works and gets me back to remission. Been on Prednisone pretty much since Feb 2011. The side effects are driving my wife and I crazy. Plus we are looking to start a family soon, and I really don't want to be on Prednisone around my children. Really want to be the proper husband and parent, we all know that Prednisone doesn't exactly bring out the best in people.
If Remicade fails and surgery is the last option, that's the road I've been given. At least that road should be Prednisone free.
Posted 5/23/2012 12:36 PM (GMT 0)
I was on the same path but refused Remicade and went to a Homeopath who studied and received his PHD in Ulcerative Colitis. From the ER, to living at home barely alive Nov 2010 -- I just finished a half marathon and hope to never look back!!! Before you get the surgery, TRY a Homeopath (they aren't all the same!! just like Docs).. Mine will do consultations via email - give him a shout, he saved me from likely surgery: http://www.askdrthomas.com/cms-our-team.html
Posted 5/23/2012 1:18 PM (GMT 0)
I hope the Remi works very well for you. It has been a life saver for me because I was at the end of my rope as well. I believe they give Tylonel to help with any pain or discomfort the infusion causes. I take Tylonel Arthritis every day as it is so when they offered it to me at my first infusion, of course I had to decline because I just took some. Sometimes they have you take an anti-histamine before the infusions as well such as Zyrtec (every day for 5 days prior to the infusion) - to help prevent an allergic reaction. I am also on Zyrtec for year round allergies anyway but it didn't help prevent a reaction after my 3rd infusion. Now I get Benedryl and Iv Solumedrol before each infusion also with a slowed infusion rate. Works like a charm...for now! lol
Posted 5/23/2012 1:45 PM (GMT 0)
I agree, there are other options. I am also a big big fan of the homeopath. I have been in remission for over 1.5 years now. You can read what worked for me here

https://www.healingwell.com/community/default.aspx?f=38&m=2099301
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