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fatigue with Remicade?

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Ulcerative Colitis
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Posted 11/27/2009 2:48 AM (GMT 0)
     Anyone else feel really fatigued like I do?  Could be that I wake up at 5am...only about six hours of sleep..lol.  Could be Holidayitis.  Maybe I am expecting too much, too soon.  I am soooo grateful that my ulcerative proctitis has been behaving and I guess I want to do, do, do!!!  Months of dragging around the house because I couldn't be away from the bathroom for long and that dreaded bleeding had gotten me down.
Posted 11/29/2009 2:17 AM (GMT 0)
My husband pampers me after infusions because he THINKs it wears me out. But really it doesn't!
I have noticed I have more sniffles and congestion, I think.

I do treasure a good night's sleep. If I wake up and realize I slept through the night, I am thrilled! Lately my cats have decided (at 2:30 a.m.) that the best place to be is under the bedcovers. So they are waking me up. It's my fault, because I always give in to them. But it's hurting my sleep. My girlfriends talked me into 5:15 a.m. water arobics, but I gave it up last week, after a month. I needed that extra hour of sleep. I can do my own exercise at 6 a.m., thanks anyway.

What do you do when you get up? Maybe you could try some stretching, find a TV program on cable or get a dvd?
Posted 11/29/2009 9:05 PM (GMT 0)
     Peety...funny you mentioned the sniffles.  I started with them on Thursday.  At first I thought..."oh no, don't tell me I am getting a cold!"  I still have them but they are just a nuisance.  I don't feel ill, just tired.

     I am taking Ambien CR and get about six good hours of sleep.  Wish it were at least seven.  Perhaps this is due to the prednisone, down to 25 mgm now.  Yesterday, I had a sudden boost of energy and decided to decorate the house for Christmas.  Since my second infusion is tomorrow I didn't want to put the decorating on a back burner.

Posted 11/29/2009 9:11 PM (GMT 0)
Christine, after I went into remission on Remicade, I expected to snap back to the level of energy I had before I got sick. What I found was that it took about a year for me to get to my best energy level. Remember, your body is still healing.

I also had to remember that I was five years older than I'd been when I got sick. When we get to a certain age, we just don't bounce back to where we were years before.
Posted 11/29/2009 10:08 PM (GMT 0)
As I did after a severe flare, then remission with remicade, your hemoglobin levels are likely very low. See your doctor for a blood test.
Posted 11/29/2009 10:18 PM (GMT 0)
yeah, i agree with some of the others....maybe you are anemic.....and your body is still healing....wounds take a while to heal. this is especially true with prednisone. It slows down the healing process. If possible try to take an hour nap during the day. Your body really heals while you sleep. I have not really struggled with fatigue since starting remi, but some days, I do need a nap. 6 hours is really a little too small amount of sleep. especially after being sick. Take care of yourself even if you are feeling better.
Posted 11/30/2009 5:04 AM (GMT 0)
You've only begun Remicade, which means you're still flaring and that almost always results in fatigue. And definitely get your hemoglobin checked!


I guess it'd be a problem if you're extremely fatigued even after being in remission. That's my problem--I need at least 8 hours of sleep at night and naps during the day and am still exhausted. However, my GIs aren't linking it to Remicade or UC. And my PCP and rheumy can't figure out what it is...
Posted 11/30/2009 5:09 PM (GMT 0)
     Thank you all.  My doctor ordered BMP, CMP, CBC, B12, sed rate and C reactive protein tests.  I go to the lab on Wednesday morning.  I always request the results to be sent to my house too.
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