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Remicade? To Infuse or not Infuse.....

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Ulcerative Colitis
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Posted 6/22/2012 4:21 AM (GMT 0)
Hello everyone, I've been a dedicated reader for months now and am finally asking for help.
I began having severe symptoms in the fall of 2010. I finally went to the Dr. in the summer of 2011 and was diagnosed with left sided UC. I moved and found a new Dr. and under his care my left sided UC has went into remission except for my proctosigmoiditis. I am now at the point of considering Remicade as a treatment. I have some reservations due to my family history of heart problems and Remicade's risk associated with heart failure. I am also wondering if Remicade is necessary since my inflammation markers are normal. Despite these tests, I am still having issues with frequency (10+ a day on bad days), cramping and occasional bleeding. I guess I am wondering if a) anyone else has continued symptoms despite normal inflammation markers and b) what is remission? Do those in remission still have bad days? how many bm's a day? c) Is Remicade worth it?
Thanks in advance for any advice.
My Current meds are:
Asacol- 6x daily
Rowasa- Nightly
Hydrocortisone Enema- Daily
6MP- Raised to 175mg Daily
Desipramine- 20mg Nightly

Previously Used
Prednisone- 30mg Daily- No effect
Apriso- No effect
Posted 6/22/2012 4:36 AM (GMT 0)
Hi and Welcome.

I have had normal inflammation markers while having unbearable UC symptoms. I don't think you shoudl take that as a reason not to start Remicade. I think your medical history is a better reason to question it and the only way to tell whether it is safe for you is to talk to your GI. It sounds like you have a good GI and that's very helpful but you may want to get a second opinion. From your medications, I can see you've tried quite a few treatments. Have you ever tried any natural approaches such as dietary changes or probiotics? Neither helped me but I have seen a lot of people have luck with dietary changes, it's worth a try in my opinion. Remission can vary at different times and for different people. The first time I was in remission, it was from Asacol 400mg (3600mg) daily and I didn't have ups and downs at all. I was very stable, without a single UC symptom for over a year. The flare up following that remission was very hard to control and since, I've had a lot of up and down. A bad day for me could be 10x a day but those types of days are very infrequent. Even people who have no GI issues can eat something that doesn't agree with them. I try not to get too upset over a few bad days.
Posted 6/22/2012 12:46 PM (GMT 0)
I would say that your next reasonable step would be Remicade considering everything that you have tried with no or little success. If you are concerned about heart related issues, you can see a cardiologist and have full work up done to see if you have possible heart issues.

I never had inflammation markers in my blood, even when I was going to the bathroom 20+ times a day.

I started on Remi after having mild Uc symptoms for YEARS and I can not metabolize 6mp correctly. I yo-yo'ed and finally my GI recommended Remi. I am now in remission. I still have good days and bad days but it's not nearly as bad as the Uc symptoms. For one, I don't have the horrible cramping and urgency. BUT I have other gut issues that don't help! Such as diverticular disease and IBS. I have other AI conditions and the Remi seems to help with that as well.

I would say on an average I go about 1-3x's a day (sometimes with D, sometimes not), no pain, no bleeding, no cramping and no urgency.

For myself, I can give a resounding YES that Remi is worth it. It has helped me tremendously when everything else has failed.
Posted 6/22/2012 11:50 PM (GMT 0)
Thank you for the advice and information. Very helpful.
Posted 6/24/2012 8:40 PM (GMT 0)

Pastor_w/UC said...
b) what is remission? Do those in remission still have bad days? how many bm's a day? c) Is Remicade worth it?

People differ in their definition of "remission." Some will say they are in remission if their symptoms are very mild (1-3x daily, soft but formed stools) but it is possible for some to get back to feeling like they did pre-UC. I was in the first group until I started on Imuran and Canasa and actually achieved 100% relief from symptoms. It's awesome. Remicade may play a part but I started it while Imuran and Canasa were improving my symptoms so it's hard to tell how important it has been for my recovery.

In terms of it being worth it- if you get a full exam with a cardiologist (EKG, stress test, etc.) and they tell you that your heart is healthy, I'd give it a try. It sounds like your quality of life isn't great so you really need to do something about it.
Posted 6/30/2012 4:33 PM (GMT 0)
Is Remicade covered by most major insurance companie/policies now?
Posted 6/30/2012 4:54 PM (GMT 0)

Poolman said...
Is Remicade covered by most major insurance companie/policies now?

I think it is, provided you have not found success with less expensive alternatives. Your insurance company might require a pre-authorization.
Posted 7/1/2012 4:41 AM (GMT 0)
I was on Remicade for years but if I could do it all over again, I would have never started it and addressed my body's ill state with the way that I did in the past few years. Now I don't consider that I have UC. I am almost healed...Please read my story before you make any decisions...http://simplisticwholistic.com/blog/2012/06/my-gaps-gut-healing-journey The GAPS diet/program would also address any heart concerns at the same time.
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