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quick change to meds - setback?

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Ulcerative Colitis
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Posted 9/10/2010 4:56 PM (GMT 0)
Yesterday I saw my GI who felt I was steroid dependent.  My flare started earllier this year and progressed to where I was hospitalized 8/10.  I ended up going on remicade and received my 2nd infusion on 8/31.  I was also on 40 mg prednisone.  Because my GI felt my progress indicated I was more steroid dependent I started 6MP (50mg) yesterday and reduced my prednisone to 30 mg.  Now today I am seeing an increase in mucous and starting to see the dreaded pink/blood indication.  I am hoping that this is just temporary and my response to the reduced steroid dose.  What I'm hoping is that i am not going to go in reverse.  Was wondering if anyone experienced immediate recurrence of symptoms such as mucous, need to go, indication of blood as a result of an immediate reduction in steroid use.  Also - how soon will the 6MP aid the remicade at controlling the UC.  It was explained to me that 6MP is a biologic that assists the remicade in controlling UC as it may not work on its own. 
Posted 9/10/2010 6:09 PM (GMT 0)

I personally have not taken remicade myself but I understand the process.  I believe what you are experiencing is merely the process of going from the hospital to being discharged to feeling normal again.  I wouldn't look at it as going in reverse but rather as going through the process.  Your three weeks into the process and as I understand it takes 1-2 months to get anywhere.  Yes, people can feel better immediately but that's  rare.  You need to give it time.  Alot is happening in your body with the Remicade and a lot of GI docs like to piggy back 6MP on top of the Remicade.  So it sounds like a typical situation to me.

MyUC

Posted 9/10/2010 6:27 PM (GMT 0)
Thanks - I am just a little worried about gaining ground and giving it up.  I feel a little bit like a push me pull you with the meds in addition to the impatient side of me looking for a quick fix and clearing all symptoms fast.  I guess in reality it just doesn't work like that.  An opportunity for me to practice patience I suppose.
Posted 9/10/2010 7:39 PM (GMT 0)
I am sorry to hear about your sitution, it sounds stressful. I am not on Remicade but I can somewhat relate because I've been on prednisone for a while and I have been having trouble getting off because I keep relapsing. I am trying to come to terms with the fact that surgery may be the best solution at some point. I am not quite there yet but if I tried remicade and that didn't work and I was unable to go below 30mg of prednisone without a flare up, I would be consulting with a few surgeons.

You should give yourself some time to adjust to the new medication. 6mp takes months to show full effects. I started it in May or June and I was starting to flare up on 6mp and prednisone (7.5mg) for quite a while. I am finally sort of stabalizing but I don't know if it has anything to do with 6mp or if it's because I started taking 5ASAs again and I took a course of antibiotics.

I have heard remicade can take quite a few doses to become fully effective. Keep thinking positive!! Maybe a 10mg taper is too much for you. You could try going to 35mg and then to 30mg, that may be easier on your body. I am going in 1mg now because my dose is low and I am worried about a relapse.

Have you been checked for bacteria?
Posted 9/10/2010 8:20 PM (GMT 0)
The Remicade might not have kicked in yet. I was on 20mg of prednisone when I started Remicade and didn't start tapering my pred. until a week after my third infusion. I just went down to 5mg today and I get a little extra gasiness and abdominal pain for 3-4 days after I drop my dose. A lot of people have reported that their UC will react to a drop in prednisone and then even out after a bit so, I wouldn't worry yet. And, you're going to have symptoms getting off pred and onto 6mp. Just no way around that really. ;o(
Posted 9/10/2010 8:39 PM (GMT 0)
Thank you for the input. It helps to hear when others experience the same thing to changes in meds. This is a whole new ball park for me and I am learning a tremendous amount from everyone here at the site. This helps give me peace of mind as I don't necessarily get all my questions answered by the drs.
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