6mp - Can it be damaging to other organs?

   I have been on 6MP since March.  I am very worried about the side effects and have read on here many people had to stop taking it because it was damaging other organs.  My latest Prometheus test (Nov. 08) showed high risk for my liver and low effective level.  I wasn't told the exact numbers of the levels this time but I had one back in the summer while taking 50mg and it said the same thing.  My GI said since my liver enzymes were still normal (Sept.) he upped me to my 75mg dose based on weight.

   Over the past few months I have lost 35lbs. and I think the Lialda helped way more than the 6MP to end my flare.  My urine was very dark and we went down the whole kidney stone road.  Took care of that, but my urine is still like Coke.  The urologist says it's not blood in my urine any more, it's bile in my urine that is making it dark.  I can't find anything on google about this.  It just says that a doctor should then check liver enzymes to try to see why bile is in the urine.  My last liver enzyme test in Nov. showed slightly elevated levels but my GI didn't want to lower my 6MP dose.  I was hoping he would let me drop to a 50mg dose.  My urologist has ordered a CT which I was supposed to have this morning but I could not hold down the nasty, thick, white stuff I had to drink.  I had to re-schedule the CT so they could do a "tang"/IV prep.

   I'm not in a lot of pain.  I feel achy but I have an almost 2 year old and so I just brush it off.  At times I feel really bad and I get weak, shaky, have nausea, and the area between my neck and shoulders hurt.  Anyone have any suggestions?  Did any of this happen to you with 6MP or are these symptoms of the 6MP damaging another organ?  I even asked my GI nurse over the phone today about bile in urine and she said she had no idea.  Any help would be wonderful.  Experiences or tests that should be run?

Post Edited By Moderator (Red_34) : 1/8/2009 6:45:24 AM (GMT-7)

Hi there...your situations sounds just awful! I have not experienced the dark urine, and I cannot believe you are not getting answers! I would think that because you have such an abnormal situation your doctors would be trying to find out what is wrong.

Why are you taking the 6MP? I am not familiar with these medications either. Are they more powerful that the 5asa? I'm taking a decent dosage of Asacol, Prednisone and Remicade infusions. If the 6MPs are so scary for organ damage, are there other options for you?

I understand that you have to just push your symptoms to the side and keep on truckin' with your baby around. I have a 12 month old and though I'm in agony he only sees a smile and still gets my full attention. I've not tried the below the waste medications...my doctor explained that it's just a way for the medication to get into the body more rapidly...and since I'm not reacting to my other medications he feels it may not work long term. So...I'm making due with my flare until my next infusion and then I'll have a week or two of improvements before slowly creeping back into where I am today...yucky. However, we're meeting with a surgeon later this month, as we've opted for the colectomy. : )

Anyway, sorry I'm not much help. I've had this disease for almost two years and we've tried many different levels of medications, and different kinds of these medications...I had a horrible reaction to a different steriod and it just seems like I improve a little with each change but then I become extremely ill over and over again. I wouldn't know what to think if I started having issues with my urine! I'm a little snotty right now b/c I'm dealing with a flare in addition to pms. : ) I just love being a woman!!!

I do wish you luck...I almost feel like calling my GI nurse and asking her about your urine issues. She's extremely knowledgeable and has given us a lot of advice regarding my dad his liver issues. I just think the world of my providers, as they have become my primary and do so much for me and my family. : )

Have a nice evening!

: ) Robin

Ok The dark urine is due to high porphyria levels. Porphyria is a group of disorders involving irregular enzyme levels and heme. There's not a lot on the internet about this. It is very rare and is often genetic but can be medication induced. I believe mine is medication induced. I called my GI right away and got the test results to him and questioned him about the 6MP doing this to me. He never called back Friday so I got with his office this morning. His nurse said he looked over everything Friday and had her pull my chart. She pretty much said he didn't know what to do and was going to need some time to research this. I know some of you had to quit 6-MP for various reasons including liver, pancrease, and even migraine head aches. If anyone has ever heard of this or had this from 6MP please help!! Even my doctor is stummped. I am supposed to see an internest but no one has called me with that appointment yet. Usually people on here know more from personal experience than I can find on the internet. Thanks for any help!!

I thought about stopping or reducing the 6MP myself but then I was afraid whatever test they may want to run would not prove it was the meds. since they would no longer in my system. I too felt my case should be handled more urgently but they say I can't be in an acute attack because I am not in a any pain. I hope to get answers soon and will post. Doesn't seem anyone else has had this but maybe my experience could help others in the future if it evern happen to them. Thanks Judy!