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Advice on meds.

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Ulcerative Colitis
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Posted 9/19/2014 3:22 PM (GMT 0)
Hi there,

My son was diagnosed 3 months ago. He was started on 1600mg of Asacol 3 times a day and a tapering dose of prednisone starting at 50mg. Since then he's been to the hospital 3 times for blood transfusions, he's Thad 3 iron infusions in the past 3 weeks, and has had 2 endoscopys that showed no bleeding. His GI wanted to start him on remicade or Humira but our insurance won't cover it until he try's two other (cheaper) meds first. Any recommendations as to what meds to try next? The GI's PA spoke to us at the hospital and said the GI didn't want give my son a certain med because it's extremely toxic. He made it sound like that was the only other med to try. I don't remember the name, but I'd like to have more info on meds before we go to his next appt.

Any info much appreciated.
Posted 9/19/2014 3:30 PM (GMT 0)
Sorry to hear your son has had such a rough time with his uc. Normally, GI's try anti-inflammatory medications such as Asacol 1st. GI's then try immunosuppressive medications 2nd (e.g., Mercaptopurine/6mp, Imuran, or Azathioprine). GI's then try biologics 3rd (remicade, simponi, or humira). To me, it seems like your GI is skipping immunosuppressive meds and going right to biologics and your insurance company wants to try immunosuppressive meds BEFORE going to biologics.

Both immunosuppressive medications and biologics require ongoing blood monitoring. immunosuppressive medications (e.g., Mercaptopurine/6mp, Imuran, or Azathioprine) work by reducing the amount of white blood cells in his bloodstream. White blood cells attack healthy tissue and cause the inflammation present in uc. By reducing that white blood cell count, you have less inflammation. The blood monitoring is to make sure the white blood cell count does not get too low. Blood is also monitored to make sure the liver isn't damaged due to the medication (is that what your GI meant by toxicity, specifically of the liver?). Blood is monitored weekly at first, then it is reduced slowly to every three months. Many of us here are on them, myself 6mp, and they are safe while you are monitored. The only downside to immunosuppressive medications is it takes 2-3 months for the medication to build up to therapeutic levels in the body.

Biologics, on the other hand, can work a lot quicker.
Posted 9/19/2014 3:46 PM (GMT 0)
Please read the resources thread at the top of the page. It helps to educate yourself as much as possible and be part of the decision making process because it can be like playing cards in that if you aren't playing with a full deck it will be a lot more difficult to make decisions. That's why you need to educate yourself. Has he been taking any mega dose probiotics of 50 billion CFU's or more or doing any dietary changes? Several different supplements have scientific evidence of helping UC. The only trouble is different ones work in different people and some don't work in anyone. Like the meds, it is all trial and error. How old is your son?
Posted 9/19/2014 7:57 PM (GMT 0)
He's 18. He has a lot of trouble swallowing pills. He finally was ok with getting the Asacol down, but he can't seem to get capsules down. So we try breaking them open and putting them in smoothies (probiotics) but then he doesn't like the taste of the smoothies and ends up not drinking it. I'll drink anything...not matter how disgusting it is...if I know it's good for me. He's not like that. He gags...and almost throws up. Before being diagnosed with this, he was almost never sick so he never had to take pills. I know he'll get past it eventually.

Anyway, we've got an appt with the GI in an hour. The one med the PA was taking about being toxic....he was meaning for the liver. I know a lot of these drugs are very hard on one's system though. I there one of the second level meds that he should try first?
Posted 9/19/2014 8:35 PM (GMT 0)
the immunosuppresants in the nid-level are most variants of purine drugs, including 6mp (Mercaptopurine), Imuran, Azathioprine ... etc.

http://en.wikipedia.org/wiki/Purine_analogue

all need screening for evidence of toxic side effect on liver, and you should also get a test to see if your dose is at "therapeutic" levels.

you can ask the GI how they differ, and what he prefers to work with.
Posted 9/19/2014 10:44 PM (GMT 0)
Did I read it correctly that you are breaking up asacol tablets? You are NOT supposed to do that, because they have a delayed release coating (cracked or broken tablets should be thrown out). Apriso comes in smaller tablets. Colazal can be taken without the casing, it's an openable capsule you are free to sprinkle over apple sauce, mix in yogurt, etc.
Posted 9/19/2014 10:50 PM (GMT 0)
I'm pretty sure you're not supposed to open colazal capsules either.
Posted 9/19/2014 11:22 PM (GMT 0)
Yes, you can open colazol and sprinkle on apple sauce it actually says that in the directions, but it could stain your teeth.
Posted 9/20/2014 2:40 AM (GMT 0)
No....not breaking up the Asacol. Just opening the probiotic. They sell it in a powdered form too so I figured that was ok. The doc started him on 100mg of Imuran, once daily. He told us it wasn't going to help but according to our insurance he has to try it first. The Humira rep was actually in the office while we were there and we all spoke about how to get the insurance to approve it. He's going to work with the office and try to make it happen. He's also going to start an elimination diet tomorrow. I've got my fingers crossed.
Posted 9/20/2014 3:28 AM (GMT 0)
I find it weird that he would say that Imuran was not going to help. How would he know? Imuran has helped tens of thousands so, like I said, that is kind of a weird comment.
Posted 9/20/2014 3:35 AM (GMT 0)
I agree with Gary. That comment about Imuran not going to help is pretty negative coming from a GI. Many people stay in remission on Imuran. Unless he meant that it wouldn't help in the short term since it takes about 3 months for it to kick in.
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