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One very bad side effect with 6MP, on to remicade

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Ulcerative Colitis
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Posted 5/14/2013 2:27 PM (GMT 0)
Hey guys, about three weeks ago I started on 6MP after starting to flare again. In that time I was having some side effects, mostly just an uneasy feeling, like I was always on the verge of getting sick and nauseous. Well on Friday I started developing some major pain in my upper abdomen. I initially ruled this as just cramping, but it continued all weekend, and got pretty severe on Sunday afternoon. I finally called my GI, and apparently 3% of people that take 6MP can develop pancreatitis, and after a blood test yesterday, I was one of the lucky ones. Thankfully my numbers weren't bad enough for me to go to the hospital, and the pain has diminished, so its just a diet change, mostly just staying clear of fatty food till the pain goes away.   Now, I am off the 6MP and it seems that remicade is the next step. I know that many of you are on it, and was curious what the initial process consisted of, and how you felt initially. 6MP seems to have calmed down my initial flare, of course at the expense of my pancreas, but I'm nowhere near as bad as I was a few weeks ago. I'll still go through with the remicade though, as I am sure I am still flaring.   Has anyone else had the  same luck as me with the 6MP, my GI said he's only seen this happen a few times.   I am also somewhat nervous about starting remicade, but I am optimistic as well. So any words of encouragement would be greatly appreciated.   Thanks   - Adam
Posted 5/14/2013 2:33 PM (GMT 0)
Oh and I think my GI is starting to lean towards me having Chrons. Through all the initial testing my results have always straddled the line. He said the look of my colon had all the signs of UC, but it was intermittent which is more in line with Chrons, the biopsy’s point towards UC, but the blood work says Chrons. Either way I'm getting treated the same way, but he seems to bring this up more and more when I talk to him. So is there anything different that I need to be aware of between the two, or am I fine treating them the same.

Thanks
Posted 5/14/2013 2:37 PM (GMT 0)
Hey wolfe. Sorry to hear about the side effect. That's good that it sounds like the pancreatitis can resolve relatively easily though.

I've been on 6mp for a couple of years and not had a problem yet that I know of, with the exception of getting shingles on my scalp when combined with pred.

I am like you, started with UC diagnosis and has changed to Crohn's over the years. There shouldn't really be a difference in the treatments. Entocort might be an option for you more than with UC. Also, if you are a smoker I would probably stop that as it seems to aggravate Crohn's more than it would UC.
Posted 5/14/2013 2:42 PM (GMT 0)
Levi - Thanks, I don't smoke, quit that almost 10 years ago. Good to know that there isn't much to change. Glad 6MP is working for you, like i said only 3% have this issue with 6MP, so I am majorly in the minority here.
Posted 5/14/2013 2:47 PM (GMT 0)
I'll be joining you on starting remi soon. I have a drs consultation today to talk about scheduling my 1st Remicade infusion. I have been on 6mp and pred since Jan 2013, and it has helped me mostly out of my flare symptom-wise (I am down to 1-2 bms a day now and a couple sit on the bowls to have a wet fart). However, my end of April flex-endoscope said there is still a lot of severe/moderate inflammation as far as he could see with the scope. So, he won't let me get off the pred until the inflammation is in-check as I'd just flare again. Hopefully, remi is the answer to get me off of the dreaded pred.
Posted 5/14/2013 3:00 PM (GMT 0)
iPoop - I don't have anything set up yet, I have to do two blood tests first, and wait for my insurance to except the remicade treatments. I'm thinking next week I'll have something set up. Let me know how your consultation goes. I think the 6mp may have helped some, but I wasn't really on it long enough, so it could be a coincidence, but I know that since I've been on it the blood has stopped and the frequency has gone down. Of course perhaps it was the fact that my pancreas is jacked up, taking the attention away from my colon, but who know, not even sure if that's how it works lol. But either way things have calmed. I haven't had a colonoscopy since Aug, but my doctor is pretty sure my colon is still pretty bad. Good luck with the remi
Posted 5/14/2013 10:51 PM (GMT 0)
I was on Imuran (similar to 6MP) for yers w no issues, then developed pancreatitis. Not fun. I was hospitalized for 12 days with it. Remi didn't work for me, ended up going for surgery. Good luck.
Posted 5/15/2013 1:14 PM (GMT 0)
Wolfehound22, yesterday, my doc set me up with all of the needed tests before remi can be given: chest xray, tb test, and a hepatitis test. I'll get those done soon. He said see you in 3 weeks for another flex-sig, as my symptoms are not all that bad (1-2 actual bms a day, and perhaps another time or two that I run to the bathroom and either nothing happens or I just fart or whatever). I was quite surprised by this as I figured he would schedule the remi infusion right away. As the last time I spoke with him it sounded like that for sure.

He did increased my 6mp dose at the beginning of April and he wants to give that more time, and have another look at my progress before prescribing Remi. He says if my colon looks like raw hamburg when he looks up there again then its Remi for sure haha.

They are going to have in-house remi infusions at my GI's office around 3-4 weeks from now which will save me major $$$ if I need to get it done. As my insurance charges only a $30 copay for remi infusions done in my gi's office, vs a $3,000 deductible if it is done in the hospital. He says there is no harm in waiting a little longer as my symptoms are not that bad and there is a chance that 6mp alone might be enough if given more time. So it is wait and see I guess.
Posted 5/15/2013 1:24 PM (GMT 0)
When I started on Remi, I had the TB test and some blood drawn. I then just showed up at the hospital for the infusion. I was really nervous at first but now I look forward to it. It has been my saving grace because it has put me into 100% remission while other meds failed me. It's actually relaxing to go in for it. They hook up an IV, they give me oral Benedryl and IV Solumedrol (because I had a reaction after my 3rd infusion), I wait a half an hour and then I get my Remi. All in all it takes about 3-4 hours. Usually I take my I-Pad with me so I can play online, read etc. Sometimes the infusions are done at cancer infusion centers.
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