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Ulcerative Colitis
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Posted 5/20/2009 4:25 AM (GMT 0)
My daughter (7) had her Ped. GI appointment today and I asked him about Asocol and if it ever stops working.  Dr. W said statisitcally most 5ASA's stop working after 2 years and the patient has to move on to stronger meds.  Why, they have no idea (It amazes how little they really know.  Most answers are "We don't really know")

I'm a little surprised and very concerned.  My daughter has had UC since she just turned 5 and the end of May she will be 8 - she has been doing great.  What is the longest you have been on 5asa's succesfully and if you flare does it bring you out of it?

Thanks.

Posted 5/20/2009 4:49 AM (GMT 0)
For me, it's been 20+ years, and I intend to continue forever..lol!

Is your daughter able to use any rectal meds, because, that would be helpful to her for lower colon inflammation.

I wouldn't know what to think....but I would say the reason for the failure could partially be patient non-compliance or sensitivity to 5ASA or that the patient has been started on too high of a dosage and had to stop.

Not so cut and dry from my perspective.

If your daughter's doing well...I suggest you continue with the 5ASA until the time is as such...but there are also other 5ASA meds, both oral and rectal...plus, she can increase as needed and tapered to a maintenance.

I see she's on calcium....what about vitamin D...has she been checked regarding her levels?

quincy
Posted 5/20/2009 5:19 AM (GMT 0)
for me theyre pretty weak and i pop asacol like tic tacs, dont even know if its doing anything. when i first developed colitis i was put on asacol and thats the only time asacol alone brought me into remission, probably for about 4-6 months before i flared again. now i just look at asacol as a side dish to the stronger meds i depend on like humira and prednisone when humira fails.
Posted 5/20/2009 10:00 AM (GMT 0)
For me Asacol works wonders and pentasa. I started out on a low dose and made sure the doctors started me out on a low dose. I agree with quincy. If your daughter is doing well keep to the pentasa. Don’t surrender to the higher durgs unless absolute necessary. Even though my symptoms have been worse than before I am still taking pentasa. I have had no blood or mucus in my stool for the last 6 weeks. Lets just hope I can combat the rest of the symptoms.
Posted 5/20/2009 10:43 AM (GMT 0)
Asacol doesnt seem to do much for me....actually I think it causes me to have more urgency...
Posted 5/20/2009 12:33 PM (GMT 0)
I was on Asacol for 12 years when it stopped working for me. Strike that, Asacol "seemed" to help but it never really put me in remission. Of course back then they didn't have much of a choice of Uc meds. Then Colazal came on the market and it did much better on that. But I wouldn't worry about it losing it's effectiveness because most people do well on it for years and years. Take one step at a time and if she seems to get worse then by all means contact the doctor to try a different medication.
Posted 5/20/2009 12:34 PM (GMT 0)
You guys scare me. I hope I don't flare againf or a long time.
Posted 5/23/2009 5:19 AM (GMT 0)
Thank you all. Quincy - yes she is also on D and had many tests run when she was first diagnosed. I do not think that she had the scan for bone density. If she only has flared once (in the beginning) would the test your talking about be necessary?

She has blood tests every 3mths
Eye exam once a year
TB test once a year


Pentasa brought her out of her original flare within one week (pancolitis). So I'm hoping it continues to work well for her (now on Asacol - because she can now swallow pills)
Posted 5/23/2009 6:28 PM (GMT 0)
Hi...I was meaning vitamin D levels...that in itself is important, especially to recognise lower levels in kids.

Please remember that if she gets a stint of being constipated...that could mean she's having low in the rectum inflammation.
That would be a good time to consider rectal meds.

It's great your daughter is doing well.

quincy
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