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Ulcerative Colitis
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Posted 7/23/2014 2:08 PM (GMT -7)
So I had a severe flare in may and was put on remicade. I also just finished my prednisone taper about 10 days ago. I have had two infusions of the remicade and things were going pretty well but just started to get worse. My next infusion is tuesday. Does this mean remicade doesn't work for me or is it just because of being off of the prednisone?
Posted 7/23/2014 3:06 PM (GMT -7)
My guess is off the pred. How quick did you taper?
Posted 7/23/2014 3:19 PM (GMT -7)
Well, the game plan is that the Remicade is supposed to work well enough where you can get off the pred with no symptoms.
Posted 7/23/2014 4:02 PM (GMT -7)
It may be a bad sign or it may be perfectly normal. Getting off pred is tough no matter how you slice it. I would try to keep thinking positive and hope for the best. Let your gi know what's going on in the meantime. We all have ups and downs. A bad day doesn't always mean you're going to get worse. Try to take it in stride. The more I worry, the worse my condition tends to get...
Posted 7/23/2014 4:06 PM (GMT -7)
Also remember that Remicade doesn't always work fully right away. It can take up to 5 infusions to be sure if it's going to work. Even if it does work perfectly, it still can take weeks or months for your colon to heal.
Posted 7/23/2014 4:20 PM (GMT -7)

iPoop said...
My guess is off the pred. How quick did you taper?


I tapered 5 mg per week after staying at 40 mg for the first two weeks
Posted 7/23/2014 4:21 PM (GMT -7)

Judy2 said...
Also remember that Remicade doesn't always work fully right away. It can take up to 5 infusions to be sure if it's going to work. Even if it does work perfectly, it still can take weeks or months for your colon to heal.


I have heard that I shouldn't expect it to be an instant fix. Coming from the flare I was in, I'm not surprised it is taking my colon this long to heal.
Posted 7/23/2014 4:26 PM (GMT -7)

notsosicklygirl said...
It may be a bad sign or it may be perfectly normal. Getting off pred is tough no matter how you slice it. I would try to keep thinking positive and hope for the best. Let your gi know what's going on in the meantime. We all have ups and downs. A bad day doesn't always mean you're going to get worse. Try to take it in stride. The more I worry, the worse my condition tends to get...


Just out of curiosity, if the Remicade doesn't work, what would be my options at that point?
Posted 7/23/2014 5:25 PM (GMT -7)
You should read the resources thread at the top of the page. There are many options from meds to diet to supplements, to alternative stuff. Seems like the people who respond best are using combination therapies. That's what I do. I take meds, some supplements and have a diet strategy, but not an actual diet.
Posted 7/23/2014 6:48 PM (GMT -7)
It definitely takes a bit to start up I was tapering pred when I first started as well and I remember it felt iffy at the begining and it just turned out to be the pred, after the first couple infusions I was feeling great.
Posted 7/23/2014 7:01 PM (GMT -7)
I was also iffy at the beginning of my Remicade journey. I don't think I felt a lot better until my 5 or 6th infusion. Just give the Remi a fair try to see if it will work for you, right now it's too early to tell if it will or won't.
Posted 7/23/2014 10:59 PM (GMT -7)
Hello GolfGuy,

Flaring does not mean it failed. Don't give up yet - especially because there aren't a lot of options for refractory UC (resistant to treatment).

However, LET YOUR PROVIDER KNOW IMMEDIATELY.
Dose and frequency can be tinkered with, 'titration', to get the optimal effect with minimal side-effects.

As with all meds, give it a full trial to work - which differs for each drug and each person. Certain combinations of medications (from different categories) have better results than a TNF-blocker alone. This is true for remicaid and imuran (TNF-blocker and immune suppressive respectively).

It is also possible, an option, to overlap induction of the TNF-b with prednisone (or another medication) to maintain remission before tapering off completely. There are a lot of people who are not able to maintain remission without prednisone, known as pred dependence.

Yes, some people don't respond to remicaid, but may with a different TNF-b. Current genetic research is exploring whether one's genotype can reveal (in advance) who will respond or not.

Hope this information is helpful. A superb source of medical information is the National Library of Medicine, National Institute of Health, PubMed Central (public access search engine for medical literature)
http://www.ncbi.nlm.nih.gov/pmc/

PS; I see that you are a new member, Welcome. FYI - a word of caution on the internet; this forum is not a place to seek specific and personal medical advice. We are all patients & family of persons with UC. We are not IBD-GI physician specialists. If you look closely, we represent a wide spectrum with forum members who do not believe in science or western medicine to expert patients; and every level of understanding and wisdom in between.

Wish you the best, DennyRae
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