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Just started 6mp... terrified.

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Ulcerative Colitis
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Posted 11/12/2013 6:08 PM (GMT 0)
So 4 weeks after my 3rd Remi infusion, I have seen some improvement, but not enough. Still bleeding, still mucous. So I just started 6mp yesterday (50mg) and am terrified. Terrrified of getting pancreatitis, terrrified about losing my hair, terrified about the affects on my blood counts, terrified about the long term effects, but mostly terrified that this won't help get me to remission either.

Also... I have been scheuled for my next remi infusion at 10mg/kg next week which will be 5 weeks from my last. My GI has also refered me to an IBD specialist at the University of Pennsylvania to get a "second set of eyes."   That terrrifies me too. 

Posted 11/12/2013 6:19 PM (GMT 0)
i'm rooting for you!!!

i've been on 6mp on and off since 2011. i really don't get any side effects besides high liver enzymes- and i really can't tell when i have that. i just get blood work done every week. i hope the increase in remi helps you.

i have been looking into clinical trials at the mayo clinic. gonna see if i can somehow get into one. there are a handful of new drugs in the works.
Posted 11/12/2013 8:04 PM (GMT 0)
I can relate to the anxiety you're feeling. I was really overwhelmed and worried when I first started. Luckily, I haven't experienced too many of the side-effects. When I first began it made me feel really sleepy and disconnected but that only lasted a week or so. I felt like I was losing hair but that also didn't last long. It is scary to think what it might be doing long-term....I try not to think too much about that though. If it's not one thing it's another. I hope you experience a positive outcome from it!
Posted 11/12/2013 8:23 PM (GMT 0)
Everyone feels that way when starting these medications. In my case, 6mp alone has given me a long remission. I feel very lucky to have done so well with it. I take a low dose and my UC is very well managed. Although I don't like being on this medicine, or any, I am happy that UC is not ruling my life. I would bet that if you did some research, you would find that many people have taken 6mp for a very long time for various purposes and that those people live normal lives. my blood counts are not great and while it's not ideal, it hasn't caused me to get sick or caused me any issues. The blood issue has been much less problematic than UC. I just get blood drawn a little more frequently. People on 6mp typically go every 3-6 months. I try to go every 3.
Posted 11/12/2013 8:46 PM (GMT 0)
I did read that there are not studies on long-term usage of 6mp at low dose (100 mg or less), so the long-term effects are not definitely known as they are with the higher, more traditional dosages.

Anyway, I just feel like all these medications that work for others, just aren't working for me and having my GI tell me that he wants me to go see this Dr. at UPenn just freaked me out. He also mentioned surgery for the first time, but not.. you need surgery, it was more of a "I'm not going to send you out for surgery when you haven't gone through all the options." Still....
Posted 11/12/2013 10:38 PM (GMT 0)
I hope you have good luck with your IBD specialist. Mine has really helped a lot with my pancolitis.
Posted 11/13/2013 1:35 AM (GMT 0)
I've been on 6MP since late February. No side effects.

Here's what worked for me. You can think about whether this would work for you. Not meant to be all, "TRY THIS IT'LL DEFINITELY WORK."

I started 6MP (50mgs) and Remicade around the same time. Remi really helped, but after a few days of improvement, I'd fall back again, as bad as I'd ever been. So we did 10mg/kg + every 6 weeks, and I added in hydrocortisone enemas. That really worked for me. The hydrocortisone was able to knock down my inflammation enough for the Remicade to work. We were reasonably sure that my inflammation wasn't contained to my sigmoid colon, but somehow the enemas still helped enough to get me into remission.

So, yeah. Double-dose + every 6 weeks + hydrocortisone enemas.
Posted 11/13/2013 2:27 AM (GMT 0)
jc, if it helps, I can tell you I too have not had any side effects from 6mp, although it has only been a couple of months.
Posted 11/13/2013 2:51 AM (GMT 0)
My daughter never had any effects of 6mp that we could tell, that is the good news and the bad news. Don't compare yourself to the listed side effects for Chemo...UC ers are at a low dose comparatively. Fingers crossed that it does the trick for remission!
Posted 11/13/2013 1:23 PM (GMT 0)
Thanks all! Still freaking out, but... slowly coming off the ledge as today I just took my 3rd dose.

Science girl... sounds like your situation is similar to mine, although I didn't start the 6mp at the same time as the remicade and I am going for an infusion at 5 weeks.

How long did you use the cortenemas for? I see in your sig it is as needed now, how often is that? Like you, I think most of my inflamation is in the sigmoid area as my BM have been solid'ish whereas when my pancolitis was flaring, pure liquid.

I am still having some bleeding, but mostly its the dang mucous which makes it an impossibility to pass gas anywhere but on the toilet! lol
Posted 11/13/2013 4:24 PM (GMT 0)
jc1973 I only used them for maybe a month and a half before tapering. I only needed a couple since then, and that was all the way back in late August.

I haaaaate rectal meds (even when they're effective--it's 100% a psychological thing for me), but the hydrocortisone enemas had gotten me into remission the last time when Asacol alone couldn't quite get me there. So it was kind of a lucky guess for me. I figure the worst that could have happened (since the enemas were only $10/mo with my insurance) was that I'd feel better while I was on them. So it might be worth it, especially if you're covered by your insurance.
Posted 11/13/2013 5:19 PM (GMT 0)
Yep. 10/month. I have boxes and boxes of them. I have been using them nightly for the last 4 nights. I see a little imrpovement, but not a ton. I am with you... HATE them!!!! And, it isn't something that seems to be getting easier or more comfortable.

I also find that they make me feel bloated the next day. But, bloated is better than pain I guess.
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