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Remicade and Dry Mouth

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Ulcerative Colitis
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Posted 10/17/2013 9:06 AM (GMT 0)
Hello,

A little about me first. My name is Zach, I'm 32, and I was diagnosed with UC back when I was 18. Over the last 15 years I've never really gone more than a few months at a time when I wasn't in a flare up.

Anyways, I was just started on Remicade a few months back. After the initial dosage I had a reaction that caused me to have an extremely dry mouth for about 10 days. During that time I was nonstop drinking water water and juices (probably around 200 FL OZ a day) which of course caused me to have to urinate every hour or two. Well at the time the doctors weren't sure if it was the Remicade or an adverse reaction of Remicade with other medication I was on.

This brings me to this past Friday. I had another infusion of Remicade and have had the same reaction though it didn't really start until late Tuesday. I plan on dropping by the hospitals infusion clinic later today where they did the infusion to talk to them about it, but I figured I'd ask here as well.

Is this a reaction a lot of people deal with? Is it a major problem? Does anyone have any suggestions to help with this? I'm honestly at a point where I want to just stop the Remicade completely if I'm going to have this reaction every time.

Thanks in advance for any answers you may have.
Posted 10/17/2013 3:05 PM (GMT 0)
I recently started remicade as well, just had my 3rd infusion on tuesday. While I have not experienced the dry mouth, I did receive instructions to hydrate myself well the first few days. So... maybe that's just your body doing it for you?

The one wierd thing that has happened is that my teeth have become extremely sensitive. Others on here thought that it was related to the prednisone I was on, however the sensitivity didn't begin until I tapered down to a small dose and now I have been off of it completely for almost 1 week and the sensitivity is still there. Anyway... I am thinking it is the remicade.

Curious to hear what the clinic tells you?
Posted 10/17/2013 5:41 PM (GMT 0)
I've had a somewhat dry mouth all my life, but haven't noticed an increase on Remi. Of course, I have a water bottle beside me at all times and will sip from it.
Posted 10/17/2013 7:32 PM (GMT 0)
Yeah I was told to hydrate myself as well. I am drinking upwards of 250 FL OZ of water a day. I am also, as you can imagine, having to urinate once an hour. Every bit of fluids that go into me are going out.

When I say I am having a dry mouth I literally mean that my mouth becomes like the Sahara desert. In a matter of seconds after taking a sip of water I can feel all the water being sucked out of my mouth (as if I poured cinnamon or salt in my mouth).

I went into the infusion clinic at the hospital and they hadn't really heard of this being a side effect of Remicade (Searching online myself I have seen statistics saying that it has happened to .32% of people in one study). The tech there told me to contact my doctor and get them to put in an order for some bloodwork. I am waiting for them to call me back.

I'm not only dealing with the dry mouth. My hands, feet, and legs have been cramping up for the last 5 or 6 hours.

I'm on a lot of different medications (for my UC, PSC, and liver problems...I've been on the transplant list for over 2 years now), but I've been on those for the last 2+ years and never had these side effects until starting Remicade.
Posted 10/17/2013 7:47 PM (GMT 0)
The cramping in your hands and feet could be from all the water you are drinking. Too much water can deplete your body of potassium and other electrolytes. Since the water doesn't seem to be helping, you might try cutting back. And with your liver problems, please do talk to your doctor. There could be something else going on here.
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