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Crohn's Disease
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Posted 2/4/2009 2:23 AM (GMT 0)
My 10 yr old is taking 2400 mg Asacol and 50 mg of 6-MP.  Last weekend she developed fluid on her knee and terrible joint pain in her hips. Our GI assures us these are not side effects of either medication but I have a hard time believing her.  She has been on 6-MP for two weeks and in the last week she had had joint pain, fatigue, muscle spasms and caught a cold.  I am really not comfortable with her taking the 6-MP but I also don't want to hinder her healing.  I am told by doctors how safe 6-MP is and when I mention the drug to pharmacists they look as if I have asked if it's safe to drink bleach! shocked

We have learned what to expect with the GI symptoms but this joint pain came out of no where and caused a set back in my daughter's emotional state. Just when I think things are managable, something new happens.

Is 50 mg a really high dose for a 10 yr old who weighs about 68 lbs?

 

Posted 2/4/2009 3:34 AM (GMT 0)
I had fluid retention and problems with major joint pain due to 6mp. I would get a second opinion....
Posted 2/4/2009 11:56 PM (GMT 0)

MLD said...
in the last week she had had joint pain, fatigue, muscle spasms

If you look at the side effects of 6MP listed on this site, you will see all of the symptoms you listed. http://ibdcrohns.about.com/cs/prescriptiondrugs/p/med6mp.htm Because these symptoms started soon after starting the medication, it is logical to think that the med is the culprit. about the only way to see if the medication is the culprit is to stop the med. I'm not saying that is what you should do, but I do think you need to discuss this with the doctor. I seem to recall that the dosage for 6MP is something like 1.0 to 1.5 mg per kilogram of body weight in adults. I am not sure if that is the same for children. 
Posted 2/5/2009 12:24 AM (GMT 0)
Thank you all so much for your support and information. We are supposedly seeing "the best of the best" doctor for her condition but I have not felt totally comfortable with this Dr from the very beginning..I should have trusted my GUT :) no pun intended! I am going to get a 2nd opinion next week.

THANKS AGAIN!!! :)
Posted 2/5/2009 1:17 AM (GMT 0)
Just another thought here is that crohn's does present some joint pain. Not sure if the knees is a area that is mainly a crohn's problem though.. lol gail
Posted 2/5/2009 1:41 AM (GMT 0)
Crohn's can develop joint problems not specifically in the knee but it start in the fingers joints most of the time. that what's happened to me. That doesn't mean it cant be in the knee area. but it causes joint problems particularly when you are on prednazone.
Posted 2/5/2009 2:04 AM (GMT 0)
My Crohn's arthritis affects my feet, ankles, knees hips, and neck. This year is the first I have felt it in my hands.
Posted 2/5/2009 3:17 AM (GMT 0)
Margie
did you have a blood test to diagnose your arthritis? My daughter had blood drawn and it came back negative for arthritis. Is there a difference between arthritis and Crohn's arthritis?
Posted 2/5/2009 12:18 PM (GMT 0)
Humm... guess I should have posted my question here. Sorry!! I was just wondering the same since I just had a RA blood test.
Posted 2/5/2009 4:07 PM (GMT 0)
I get swollen ankles during a Crohn's flare and I'm not on 6MP or Asacol. See my response to TEXAN WITH CROHN'S "Bloodwork" post. It's possible your daughter is suffering from some arthritis.

I always think of swollen body things like this: Crohn's is an inflammatory, auto-immune illness. We all know Crohn's goes beyond our intestinal tract and causes "EXTRA-intestinal" problems. When anything swells or becomes inflamed, it could simply be due to the Crohn's Disease. For example, I occasionally have breathing problems where I can't get a deep breath. X-rays have shown the bronchioles in my lungs to have inflammation during these breathing spells. So doctors automatically wanted to put me on a drug for asthma. I don't have asthma. I was flaring when I couldn't breathe and a Pulmonary Function Test came back fine as far as how my lungs were functioning. So when Crohn's is active, I am of the opinion that ANYTHING AND EVERYTHING can flare.

I've also had very painful back spasms during a flare...around the shoulder blade (bursitis) and in my lower back. I was given pain patches to stick to my body for that. It was like electric shocks going through my back! The tendons and muscles were just INFLAMED.

It, of course, could certainly be a side effect from the drug, too, though. I beginning to get negative about doctors and what they REALLY know about Crohn's. I think it should be mandatory for ALL Gastroenterologists to get together every year and get their stories straight about what IS and ISN'T! :) It's a frustrating illness.
Posted 2/5/2009 4:46 PM (GMT 0)
Hi. I'm new to this forum, but have dealt with Crohn's for 10yrs. I had the joint pain (particularly in the hips and knees) and discovered that I was allergic to all 5ASA's (was taking Asacol at the time). Everytime I stopped the Asacol the joint pain would quickly improve. I had reactions to 6MP as well. I developed yeast in the esophagus, the doctor said that even the mildest dose of 6MP suppressed my immune system to much. My doctor told me just this week that Crohn's related arthritis was indisputable, but that testing wouldn't always give you positive results. Doesn't mean it doesn't exist, just doesn't show positive on tests.
Good Luck
Posted 2/5/2009 5:36 PM (GMT 0)
My daughter was tested for arthritis and it came back negative.

She has been on 6MP for 18 days and the joint pain began about 10 days ago. I just can't help but feel this is related to the 6MP. She has been on Asacol for 7 weeks and did not show any of these symptoms until starting the 6MP. I just need to find out if she can stop the 6MP or if she needs to wean off
Posted 2/7/2009 7:14 PM (GMT 0)
No need to wean off 6MP. It is not like prednisone which requires one to taper the dosage down prior to getting off.
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