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uc and blood work resuls

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Ulcerative Colitis
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Posted 9/11/2015 1:06 PM (GMT 0)
Son has UC and is on lialda and 6mp went to dr yesterday and was told that he was supposed to have blood work checked frequently due to being on 6mp. Previous doc did not tell us this. I have had such a hard time finding a doc that I can count on. My son is now 20 and has had uc for the last 7 years. It has been worse for me of course, but I wish that there would be some meds that didn't have so much side effects. He is also on prednisone which he has gotten so used to and if he goes off he goes right into a flare again.
What to do? Mom just venting!!!
I am also scared about his blood work because its been over a year since he had it done with his last colonoscopy.
Posted 9/11/2015 1:21 PM (GMT 0)

nuttymommy said...
Son has UC and is on lialda and 6mp went to dr yesterday and was told that he was supposed to have blood work checked frequently due to being on 6mp. Previous doc did not tell us this. I have had such a hard time finding a doc that I can count on. My son is now 20 and has had uc for the last 7 years. It has been worse for me of course, but I wish that there would be some meds that didn't have so much side effects. He is also on prednisone which he has gotten so used to and if he goes off he goes right into a flare again.
What to do? Mom just venting!!!
I am also scared about his blood work because its been over a year since he had it done with his last colonoscopy.

Well if his bone marrow isint suppresed by now, he should be fine, though he may still require a change in dose. If you are worried about the side effects from 6mp consider getting him on a biologic. In fact, since he is steroid dependent, Im surprised he isint ALREADY on a biologic. Get him off the steroids and onto something that may actually help
Posted 9/11/2015 1:45 PM (GMT 0)
yes, need to find something to replace sterroid.

if 6mp blood test shows no liver problems, he might start with Remicade.
Posted 9/11/2015 3:11 PM (GMT 0)
he needs to find a better GI. It's very irresponsible to allow him to continue treatment with 6mp without having regular blood draws. It is also irresponsible to allow him to use prednisone for maintenance of UC. Sadly, the prednisone could cause long-term damage to his bones - causing him problems later in life. In my opinion, anything is a better option than being on prednisone long-term. I feel bad for him because I know how awful the side effects of prednisone are...

People who have been on 6mp for a while usually get blood work every 6 months. 1 year really isn't that long, just get it done and see how things are. The bigger issue is that he is on prednisone. It sounds like 6mp isn't working how it should. He might need a higher dose or something in addition to 6mp but he definitely needs to get off steroids.
Posted 9/11/2015 8:03 PM (GMT 0)
*face palm*

6mp needs to be monitored at a minimum of trimonthly to look for a toxicity (complication includes liver damage) response and make sure the white blood cell count doesn't get too low (complication includes sepsis), pretty irresponsible.

Prednisone used longterm can cause osteoporosis, glaucoma, and type ii diabetes...

Biologics (humira, remicade, simponi) and if those fail surgery are much, much better than prednisone...
Posted 9/17/2015 9:24 PM (GMT 0)
Thanks for the responses

We got labs back and doc says they are pretty good considering. His liver enzymes are mildly elevated I think he mentioned the number 22. And he said that it could be fatty liver so he wants a ultra sound done. He also checked his iron and said that it was a bit low at 11 which is actually not bad since my son always had low iron counts I'm still a bit unsure cause he wants me to go see another doc that specializes in IBS. What are your thoughts?
Posted 9/17/2015 10:09 PM (GMT 0)
You should see another GI who specializes in ibd.
There are really very very few times when it is ok to allow a patient to be on steroids for log term. As others have mentioned they have terrible short term and permanent effects.
Make sure he takes calcium and vitamin d ( 500 mg 2x daily) the calcium needs to be split up as our bodies cannot absorb more than 500 mg at a time.
And add iron supplements with vitamin c.
Make sure he does not take the iron too close to the calcium as it won't all be absorbed.

It's not really necessary to have scopes annually unless the patien has had ibd for a long time of they will start needed it more frequently.

How much 6mp is he talking. Has he tries mesalamines. Rectal meds? Explore biologics like remicade

Also, regarding the statement that its worse for you than him. I really don't think so. My mom says that and it makes me very angry when she does.
Do you know how painful uc can be? Just because he is not complaining all day does not me he is not in pain.
Going to the bathroom is so painful and it's something we tend to do more often than most people. The cramps, tenesmus, nausea and severe abdominal pain are very difficult.
I know it is very hard for you as a mom to see your child go through and I can tell you are very caring but please try to be sensitive to his feelings.
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