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Posted 5/17/2010 3:16 PM (GMT 0)
Well today I was just informed from my doctor that I am to stop Imuran immedialty. I am told my white blood count is too low to stay on it.

Has this ever happened to anyone and will things return to normal? I was hesitant to be on it in the first place, but now am more worried.

Something actually happened. I am really hoping things rebound once I'm off.

I'm also getting married on June 11 and am really hoping I don't get sick now.

Trying to stay positive - maybe the imuran wasn't doing anything anyways. I know my doctor has mentioned remicade in the past, but I'm really hesitant to try that...especially after this.

Anyone have any thoughts or experiences? sad

Posted 5/17/2010 3:29 PM (GMT 0)
  Hi Chuck.  Yes, I was on 6MP for over seven years.  My dosage was 50 mgm and that kept my white count at 3.5 (low but not drastically and my doctor was pleased to keep it there).  In ulcerative colitis (or proctitis, what I have) the body's immune system attacks itself, therefore, the doctor wanted my white count to be below normal (5.0 - 10.0) but not too low so as to not have antibodies to fight off illnesses.  After starting 6MP, along with prednisone (it took 3 months to "kick in"), I did enjoy a two year complete remission.  However, after 2003 I started flaring yearly.  Last summer, the doctor increased the 6MP to 100 mgm.  I had a terrible reaction....flu like symptoms, lethargic, my bilirubin was double the normal range (liver function) and my white count plummeted to 1.6.  The doctor took me off the 6MP for a few months and my white count and bilirubin returned to normal.  He placed me back on 50 mgm of 6MP with close monitoring.

     I still flared and as you can see in my list below, I ran the gamut of meds.  Now facing surgery on June 28th.

     The best of luck to you in your upcoming marriage.  This is a stressful time for you and stress and UC go hand in hand.  Last summer we had an addition put on our home and had big problems with the contractor so that didn't help my problem either.

Posted 5/17/2010 8:23 PM (GMT 0)

Thanks Christine,

Best of luck to you with your procedure. I will be seeing my GI on June 3, so I will see what he wants to do then I guess.

I am hesitant to try the next step (remicade or humira)...especially before the wedding.

I wish they would find something that would work for everyone - or a reason we could all avoid.

I try to stay pretty positive, but days like this are the dumps. Something finally seemed to be working and ...nope...can't have it.

Posted 5/17/2010 8:31 PM (GMT 0)
Can you not try the Rowasa retention enemas?

q
Posted 5/18/2010 2:12 AM (GMT 0)
Hi quincy,

What exactly are those? I have always been under the impression that enemas helped proctitis more than pancolitis?

Maybe your theory of treat from both ends might be worth a shot.

I will mention to my GI next time. You've had luck with these?

Thanks for the feedback!!

Posted 5/18/2010 4:05 AM (GMT 0)
Hi Chuck,
I was on Azathioprine for a couple of months before one of my blood tests showed a radical increase in liver enzymes. I was taken off of it immediatly. Too bad because it was really working. Since I've been off I'm noticing a gradual increase in symptoms. I sincerely hope this doesn't happen to you.
Posted 5/18/2010 9:34 AM (GMT 0)
I agree with quincy's enema suggestion. Ask your doctor whether it is possible to get some to keep at home so that you can immediately start using if you start flaring. I also have pan-colitis right up to the ileum. But the flaring often starts from the bottom up I think, especially if you've been in remission for a while. Enemas have saved me from steroid courses on more than one occasion.
Posted 5/18/2010 3:27 PM (GMT 0)
I have pancolitis, and I am VERY much helped by the mesalamine (ie, Rowasa) enemas. I started out just on Asacol, and improved slightly, but after I added the enemas, things got better right away (I was having 20+ extremely urgent BM's a day). I think I would have gotten into remission using those two meds alone, and was almost "normal," when a tummy bug threw me back into the flare and I ended up doing a course of pred.

I'm now in a*really* solid remission, and still use the enemas twice weekly for maintenance, as studies show that people who do that in addition to oral meds stay in remission longer than those who only use oral meds. My GI definitely thinks my enema use is contributing greatly to my remission.
Posted 5/18/2010 5:43 PM (GMT 0)
Chuck....just get the prescription and try not to justify the reasoning for not using them. Simple explanation. UC starts at the rectum and climbs upward. You're on oral 5ASA....doesn't reach the rectum. Now what?

Both ends approach is my doc's logic, and need I say while it may be perceived as old school...it's not. It's the most common sense approach.

But alas....UCers and doctors seem to be butt phobic in treating that area....I totally don't get it.

And we do need a head banging against a wall smilie!!!

quincy
Posted 5/18/2010 6:04 PM (GMT 0)

Heather, I must say I love your straight to the point answers.

I think I'm ready to give them a shot - I go see the doctor in 2 weeks, so I guess I'll see what he says and if he'll give me a prescription. Anything is worth a shot and staying away from the really hard meds (which apparantly don't like me either).

Hopefully I don't get into a flare between now and then being off imuran. I think I'll be ok :-)

PS - a head banging against a wall smiley might be a good addition.

Posted 5/18/2010 6:09 PM (GMT 0)
Why don't you go ahead and call the doc to see if he'll write the Rx now, so that you can get started ASAP? My opinion is that it's better to start treating now, and not let yourself start to flare (or are you already in a flare?).
Posted 5/18/2010 10:57 PM (GMT 0)
Ya...my fiancee and I just sold our house last month and are staying with a family member for another week, so I don't have a lot of privacy right now.

I am not flaring at the moment, although not perfect either, but fruitgirl, maybe I'll take your advice and give him a call next week to see if he can write me a script for it. What have I got to lose.

My appt is June 3rd. I am getting married June 11. I don't want to get sick at all, but I REALLY want to make it to the wedding before a flare.

You guys are awesome!! Thanks

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