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Ulcerative Colitis
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Posted 8/14/2009 1:05 PM (GMT -5)
     Just wanted to throw a warning signal to those of you on 6MP.  Make sure your doctor keeps very close tabs on your CBC.  My GI doctor increased my dose of 6MP from 50 mgm to 100 mgm and waited a month before ordering a CBC.  Well, my white count dropped from 4.0 to 1.4 and my lymphocytes are only 300 (normal range 850-3900), monocytes are 99 (normal range 200-950) and Neutrophils are 1086 (normal range 1500-7800).  My red blood cell count was down to 3.3 which isn't too bad.  Needless to say, he immediately stopped the 6MP and I doubt very much I will even go back on it again.  This is ridiculous!
Posted 8/14/2009 1:07 PM (GMT -5)
Yikes! So what are you going to do as far as meds go? I hope the colazol will keep you where you need to be!
Posted 8/14/2009 1:21 PM (GMT -5)
     Right now I am weening off the prednisone...down to 15 mgm a day.  Yesterday, I felt so terrible, no energy at all.  We were vacationing up in PA for the past two weeks in our RV and I was just trying to "hang in there".  Today, I told my husband we just had to come home.  Of course my GI doctor is on vacation until next Thursday and one of his associates told me that the decrease in prednisone (tapering 5mgm per week) could cause the weakness and NOT the low white count, so he told me if I felt bad over the weekend to increase the prednisone to 30 mgm!!!  No way!!  I want to get off this stuff.

     I've been on Colazal for years, probably immune to it but still take it.  I also insert a Cort enema nightly and Canasa in the mornings.  My friend swears by flaxseed oil pills, she said it "cured" her UC (but we all know there is no cure).  But I am willing to give them a shot too.  I take probiotics and fish oil capsules.  My problem is ulcerative proctitis.

     I have an appointment with a GI doctor over at the Univ of PA hospital but not until the 24th of Sept.  ugh.

Posted 8/14/2009 1:47 PM (GMT -5)
Thanks for the very important reminder. Yes by all means, whoever is on 6mp or Imuran should have their blood checked regularly. I'm sorry that you have to get off of it. Do you think it was helping?
Posted 8/14/2009 1:59 PM (GMT -5)
      I was hospitalized for ten days in May of 08.  I didn't go into remission until Nov 1st.  Even with a maintenance dose of 50mgm of 6MP and six Colazals daily I went into a flare the end of this May.  So, I really doubt the 6MP did anything.  The doctor said my white count on the 50 mgm was up to 4.0, which is normal and he said when people with UC have "normal" white counts our immune system goes into overdrive and attacks itself, therefore causing a flare.  He usually likes it at 3.5.
Posted 8/14/2009 3:11 PM (GMT -5)
How often do you all on 6MP have bloodwork done?

I will only be scheduled monthly if the last blood test is a bit off from the previous or I slide into a low count. I am supposed to be due in October again, but I kinda pushed for it to go every 6 weeks and even more often when I feel something is off.

Posted 8/14/2009 3:27 PM (GMT -5)
My bloodwork has come back good for a while now so I don't have to have mine taken but every 3 months. If something shows wacky then I have to go in once every two weeks until it shows good again.
Posted 8/15/2009 7:31 AM (GMT -5)
Your doctor made a mistake in not having you get checked sooner since they increased your dose. You should've been checked at a week or two weeks at the latest. I question why they said to completely stop it, why can't they see what 75 mgs. will do? 100 mgs. just might've been too much for you.
Posted 8/15/2009 12:10 PM (GMT -5)
     You're tellin me he made a mistake!!!   Shame on him!  Shame on me too because I should know better.  I felt like crap when he increased it.  He took me off it for two weeks to see if my WBC's would increase.  He also took me off it last year when I was admitted to the hospital because my pancreatic enzyme levels were through the roof and he thought that was due to the 6MP.  However, by the end of my hospitalization, ten days later the test results had returned to normal which makes me wonder if it was a glitch in the lab or what.  The doctor placed me back on 50 mgm of 6MP a few months later to try to get me off the prednisone.  I finally went into remission by Nov 1st (seven month flare).  With the Colazal and 50 mgm of the 6MP I was fine until the end of this May when I started this flare.  Prednisone is really doing a number on me.  I have full blown osteoporosis and my blood sugar level was elevated slightly at my last blood test.  Both my parents had diabetes type 2, that is all I need now.  I have lost 20 lbs since the end of May.  Thank God I had a bit of extra weight on me but I sure cannot afford to lose anymore.  I am 5 ft 3 1/2 in and weigh 120 lbs.
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