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dawinner
Regular Member


Date Joined Apr 2010
Total Posts : 29
   Posted 8/16/2010 9:23 AM (GMT -7)   
Hey everyone, This is Dawinner checking in, I haven't been on this for a while and felt like I should see how everyone is doing and how their medications are working for them, first thanks to all the people who gave me advice when I was unsure whether to start with the Remicade or not. I have had 3 doeses of Remicade and have been doing very well, I even went on vacation halfway around the world last month and everything was fine. I have been almost symptom free for 3-4 months now. The only lingering thing was the fatigue in the daytime and that too is starting to subside. I have my 4th Remicade infusion in a couple of days. I just want to try and comfort people who are making the Remicade decision in telling them that it at least seems to be working for me and hopefully I won't develop any long term side effects from it. I was also a provincial level tennis player and I have started playing tennis again too with permission from my doctor. I would love to hear updates from any of you, especially the people I was communicating with in my times of distress and would be happy to help anyone or answer any questions that I can or just be there to talk to people. Thanks for your help.
21 year old male, Diagnosed with Crohn's in Feb 2010.
Previous Meds: Prednisone, Pentasa. Meds did not work apparently and inflammation became more extensive so I had to start on the current meds. 
 
Current Meds: Remicade (done 1 infusion) and Azathioprine 125 mg. Have been symptom free for 2 months even before the Remicade and Azathioprine.
 
Trying to eat natural foods, avoiding red meat, dairy, spicy, fried foods and refined sugar. Interested in trying to figure out if there is a way to get off medicines and achieve/maintain remission with diet.

minou
Regular Member


Date Joined Jan 2005
Total Posts : 140
   Posted 8/16/2010 3:12 PM (GMT -7)   
Thank you for your post! So glad to hear how well you're doing on Remicade... especially since I'll be going for my first infusion this week.

Humira didn't work for me, so this is basically my last resort before another surgery. A colostomy. At first I was skeptical about going on Remicade, since the two drugs are very similar, but I've been hearing quite a few positive stories like yours.

A trip halfway around the world... I'm so jealous!!

Keep up the good work! : )

mlatida
Regular Member


Date Joined Aug 2010
Total Posts : 129
   Posted 8/16/2010 4:44 PM (GMT -7)   
I'm dealing with a severe Crohn's flare after being on methotrexate for ~ 1year and having many mild, break-thru symptoms. The doctors want me to make a decision about which TNF-alpha inhibitor I want to take. How is Remicade? How did you make your decision?
Diagnosed with Crohn's disease March 2008. Battled a C. diff infection from Summer 2009-Spring 2010. Have been dealing with a severe flare for the past several weeks.

dawinner
Regular Member


Date Joined Apr 2010
Total Posts : 29
   Posted 8/16/2010 7:38 PM (GMT -7)   
Hey minou, I hope your infusion goes well this week. Keep me updated. What was your first surgery? What meds have you been?
mlatida: For me I haven't had any short term side effects of Remicade at all, neither on the infusion days themselves and neither on any days after the infusion. My situation was that even before my first Remicade infusion I was pretty symptom free except for a lot of fatigue but I had a 2nd CT scan done about 3 months after the CT scan that initially diagnosed me and it showed that my inflammation had gotten extensive and my GI said that my pred and pentasa were not working and that my 2 options left would be a biologic or a resection which he didn't want because the CT scan showed too much of my small intestine was affected. He gave me the choice between Remicade and Humira. I told him hes the expert and whatever he thinks is best, he said Remicade because he has gotten better results with it. It was really difficult to convince myself to get Remicade in the beginning after reading the endless list of side effects even though most of them were rare, especially because I wasn't even having a lot of symptoms and the days leading up to my first infusion were very difficult because of the dilemma but I didn't really see an option since I didn't want a resection so I had to do it. It seems to be working well for me, no short term side effects at all and just hoping and praying that I wont develop any of the rarer serious long term side effects. Even my fatigue has subsided now and i eat whatever I want although I eat generally healthy. I am also taking 125 MG of Imuran daily btw since April. Im getting an ultrasound done after my 4th infusion to see what the situation is with the inflammation. GI says he doesnt want to give me a CT scan because I have already had 2 and it has a lot of radiation.
21 year old male, Diagnosed with Crohn's in Feb 2010.
Previous Meds: Prednisone, Pentasa. Meds did not work apparently and inflammation became more extensive so I had to start on the current meds. 
 
Current Meds: Remicade (done 1 infusion) and Azathioprine 125 mg. Have been symptom free for 2 months even before the Remicade and Azathioprine.
 
Trying to eat natural foods, avoiding red meat, dairy, spicy, fried foods and refined sugar. Interested in trying to figure out if there is a way to get off medicines and achieve/maintain remission with diet.

mlatida
Regular Member


Date Joined Aug 2010
Total Posts : 129
   Posted 8/16/2010 7:40 PM (GMT -7)   
Dawinner: Thanks for the advice. Good luck with the ultrasound!
26 years old. Diagnosed with Crohn's disease March 2008. Battled a C. diff infection from Summer 2009-Spring 2010. Have been dealing with a severe flare for the past several weeks.

minou
Regular Member


Date Joined Jan 2005
Total Posts : 140
   Posted 8/17/2010 9:39 AM (GMT -7)   
Over the last 9 years I've had 2 resections and an ilesotomy (reversed). As for drugs, I've tried Prednisone, Pentasa, Asocol, 6MP, Imuran and Humira. Prednisone is the only one that works-ish, but we all know it's not good over the long term.

Here's hoping your inflammation is gone!
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