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Posted 4/20/2011 1:24 AM (GMT 0)
My daughter had her first appt. today with the Adult GI. We didn't know what to expect coming from Pediatric, but we were looking forward to a new perspective. For those who have seen my recent posts. We were worried recently by some TI pain, and after an ultrasound, the Radiologist felt he saw a fistula. She was put on Flagyl to prevent another abscess. A second ultrasound seemed inconclusive.

Our Ped. GI felt she was having inflammation, and that the Imuran was no longer working. She wanted to move to Remicade.

Well our new GI felt that there was no way to see a fistula on an ultrasound. Also, her bloodwork came back very normal. She felt that the Imuran was working and no need to change anything. She's stopped the FLagyl.

We're still waiting for an MRI, which could take months to get, but in the meantime,, it's status quo. I'm hoping that things are okay. Don't want to get too hopeful.

Thanks to everyone who offered such great advise during this stressful time.

Tom.

Posted 4/20/2011 2:08 PM (GMT 0)
Thanks for the update! Is your daughter symptom-free?
Posted 4/21/2011 12:20 AM (GMT 0)
Hi njm,

She doesn't seem to have any symptoms right now. I'll feel more secure after the MRI. When you have one GI saying that the Imuran is working and one that says it's not, it makes you wonder. I will say that both of these GI's are adamant that Pentasa is absolutely useless. I know there's many who will disagree. I'm sure there's GI's out there that have a different opinion on that. Thanks for posting. 

Tom.

Posted 4/21/2011 12:35 AM (GMT 0)
I'm glad she doesn't have any symptoms.  Wasn't she on Pentasa for a year before developing a stricture?
Posted 4/21/2011 9:14 AM (GMT 0)
Yes, she was only on Pentasa for 2 yrs. after being diagnosed. Then she developed an abcsess/fistula and severe inflammation. It was quite clear then that the Pentasa alone wasn't doing anything for her. There is some evidence though that Imuran and Pentasa together have some effectiveness. 

Tom.

Posted 4/21/2011 2:05 PM (GMT 0)
Yup, I know for me it takes both to keep me in remission. I've tried reducing the Pentasa to 1 gm 2 x daily which is half the recommended dose and I can get by for 3-4 months before minor symptoms start. The Imuran just plain can't cut it alone. But ... the Pentasa just can't do the job by itself either, that's WHY we HAD to add the Imuran. But we are all different. What works for one may do nothing for another. I know the gastro profession is really high on the biologics right now and for many they are a blessing - but there are also many who don't need to go that route, who do well w/"just" Pentasa and/or Imuran or equivalent lesser than biologic drugs.
Posted 4/21/2011 2:53 PM (GMT 0)
I agree with C2 here 100%. I personally think the docs are focused on the biologics more, but there are those of us, like myself and C2 who can't go without our 5asa meds. I am maintained only with Asacol and have been for 6 yrs. In my nearly 36 yrs with disease I have only once briefly used 6mp, but otherwise, its always been a 5asa med and some prednisone to quiet my flares down. Hugs!
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