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notsosicklygirl-- need some information on 6mp

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Ulcerative Colitis
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Posted 1/31/2014 12:34 AM (GMT 0)
I am on 6mp(was on 50 mg for 3 months and 75 mg for 3 weeks) and 10 mg of prednisone. Today my GI told me to stop prednisone and gave me uceris for 4 weeks as I could not get down on prednisone. I don't have urgency and formed stool but see blood often.

I have been reading about your success with 6mp and wondering how long it took 6mp to work for you and when did you get off steroid?

I had the blood test from prometheus and that's when my GI increase 6mp from 50mg to 75mg.I really want to get off steroid and trying to avoid Remicade or Humira for now.

Posted 1/31/2014 1:15 AM (GMT 0)
I had a really hard time with 6mp, probably one of the worst responders ever. I would take 50mg and I would have very low therapeutic benefit and high toxicity. I tried to increase to 75 and saw barely any benefit according to the lab work. I ended up having to take allopurinol to get into the right range. The combo got me in the range pretty quickly but it caused my wbc to get drastically low. I had to stop 6mp on and off a few times. It was discouraging but I kept working with it, my GI is very patient and calm and she was always positive throughout the ordeal. Finally after probably 4 or 5 months of working at it, things came together and I started feeling better. I tapered off of prednisone really slowly as well - i was on a semi-low dose when I started 6mp because I put off starting for so long. I wasn't willing to admit that what I was doing wasn't working. I was probably at 15mg and I tapered really slowly from there to 0 - like 1mg a week. Were you close to being in the therapeutic range? I hate to say it but you're going to have to be patient because 6mp is definitely not known for working quickly. :(
Posted 1/31/2014 2:36 PM (GMT 0)
Thank you for your response. My GI already started talking about Remicade. I want to give 6mp chance. We had once prometheus test and he increase to 75 mg. I had another one last week after 2 weeks on 75 mg and waiting for results. So far WBC and LFT is good. I stopped prednisone yesterday (was on 10mg) and started Uceris.

I am wondering how is remission for all the people on 6mp? Do you still have blood on and off? or complete remission? I don't have cramping. Go only1-2 times. But see blood often and sometimes narrow stool. I have been on prednisone since last June. Tapered to 10mg and flare so went back on 30mg of prednisone and started 50mg of 6mp. So frustrated..
Posted 1/31/2014 3:34 PM (GMT 0)
6mp alone wasn't enough for me, so I am now on remicade. I gave 6mp, 8months total (4 months at 50mgs and 4 months at 75mgs). During those 8 months, I tried multiple tapers off of prednisone to no avail (my uc symptoms returned at lower pred dosages). So I choose remicade and it has worked wonders for me. I am now at 2.5mgs of pred and in another week I'll be pred free (uc symptoms aren't returning this time). I've never had the Prometheus test you are referring to, although my GI did recommend it, due to the $400 out of pocket cost; my insurance doesn't cover that lab.
Posted 1/31/2014 4:15 PM (GMT 0)
@iPoop, So are you going to be on both for maintainance? What is the plan? I thought 6mp and Remicade together is not a good idea. I know that's what GIs doing so you don't develop antibodies.
Posted 1/31/2014 4:37 PM (GMT 0)
I've been on Imuran for a little over a year now. It's similar to 6mp. I'm on 175 mg and am in remission! The imuran starting working after about 6 weeks. We played with the dosage a lot. My doc put me back on Lialda a few months ago. My blood tests have been great, with no ill effects on my counts.
I have no more blood or mucus. Very little urgency. Normal stool most of the time. Some days I have no bms at all! I only have problems if I go overboard on salad. Having given it up for 2 years, I have been so excited to reenter it into my diet. If I eat too much in one day (at lunch and dinner), I will have D and cramping that night. Then, I'll be ok. So, my experience has been very positive. I'm very vigilant about germs (no handshaking at Mass, no touching doorknobs, etc), so I have been the healthiest I've ever been non UC wise. It takes a bit of time for the body to respond. I'm lucky that mine did. Hope your's does too!
Posted 1/31/2014 5:08 PM (GMT 0)
@Cita, good to know that you are in remission. did you take prednisone? if you did, how long it took to get off it? I am hoping 6 mp works and don't have to move to Remicade yet.
Posted 1/31/2014 5:39 PM (GMT 0)
PamSmith, I don't know if I'm in remission yet. Right now the plan is to get off of pred, do a flex-sig, and perhaps get me off of the meslamines (rowasa and lialda). So, yes remicade and 6mp for maintenance. Not sure of what 6mp dosage for maintenance, could be lower than I am now.
Posted 2/1/2014 1:33 AM (GMT 0)
Yes, I did take pred. I was on it for 5 months! It stopped the bleeding and really helped, but was obviously not a long term solution. I gained 25 lbs, didn't sleep I was up to 60mg a day. Once I started the Imuran, I started to taper. That took about six weeks. It was heavenly getting off it! My doc said we'd be looking a remicade if the imuran didn't work. So far, so good. Good luck!
Posted 2/5/2014 8:47 AM (GMT 0)
Hey NSSG and others on 6MP:

I think im finally considering 6MP, after resisting all my 4 GIs advice (Lol yes i have seen that many in under three years).

I've got a few questions:
1- do you flare on 6MP?
2- how much do you weigh? My GI wants me on 50mg but i want to try 25 mg first because my body is sensitive to meds in general, also im petite and weigh only 47 kg (so thats about 100 ib).
3- is there such a thing as developing resistence to 6 MP so you end up increasing the dose until you can no longer take it?
4- am i on 6 mp for life? Or can i safely stop it if im in a good state?
5- any other advice?

Thanks :))
Posted 2/5/2014 2:06 PM (GMT 0)
I am on my 2nd. Week of 6MP. Had blood work every week , no problems.
My G I Doc also put me on Prednoisine,done with it now .
The above drugs have stopped the diarrhea , I feel great.
Don't know what my GI will d when I see her next wee turn
Posted 2/5/2014 2:09 PM (GMT 0)
Made a mistake , I am on my 2nd month of 6MP turn
Posted 2/5/2014 2:23 PM (GMT 0)
@Conquer UC, I was like you. Tried to resist for long time but since october 2012, have been on prednisone 3 times and everytime I tapered symptoms came back. So after last colonoscopy, started 6 mp in September 2013. Started with 50mg with 30mg prednisone. I had blood test before starting(TPMT test? not sure). I started feeling better in 4 weeks. Then I had another blood test to see if I am on therapeutic level. After that my dose was increase to 75mg. It's been 4 months since I started 6mp and I was down to 5mg of prednisone. Started seeing blood so increased prednisone to 10mg. Last GI visit, he stopped prednisone and started Uceris but I feel, I am in little flare now.

So to answer your questions.
1.Yes you can flare on 6mp or it may not work for you.
2.I think 50 mg is not bad. If you take at night, you should be fine.
3.You don't develop resistance but it may not work even if you increase dose.
4. If it works, I would not mind taking it for long. This medication has been around for long time compare to biologics. So to avoid biologics, I would stay as long it keeps me in remission. Also if you go on biologics, most GIs want you on 6mp so you don't develop antibodies.
5. No advice as I am still trying to get in full remission after 4 months of 6mp and 7 months of prednisone.
Good Luck! and I hope it works for you and you go in remission for long long time.
Posted 2/5/2014 3:26 PM (GMT 0)
1- do you flare on 6MP? I flared recently when I got a cold but I feel like things are getting back to normal.
2- how much do you weigh? 120 / I was on 50mg to start but ended up on 25mg due to having a lot of back reactions and low blood counts. 25mg is not a normal dose, most people are on 50mg+ and I would start there and get a baseline for how you d according to the regular lab work.
3- is there such a thing as developing resistence to 6 MP so you end up increasing the dose until you can no longer take it? I don't think so. Seems like the worst problem would be that you never had a result from it or you develop side effects or pancreatitis. There is a therapeutic range for 6mp. You can test to see if you're in the range. If you're not in the range, the chances of responding are low. If you're too high, you can develop neutropenia. it's pretty much a balance. Being in the range doesn't necessarily mean you will have results...
4- am i on 6 mp for life? I have been on it for 2-3 years and there has been no mention of coming off of it. I will probably stay on until my GI decides there is a better solution for me.
5- any other advice? try to stay calm. It sounds worse than it is. It's just like any other medication, you take it and forget about it. I've had no bad side effects.
Posted 2/7/2014 12:48 PM (GMT 0)
Apologies for not replying to this earlier, i had been really sick this flareup with throwing up added to the D (never had that before).

Thanks Pam and NSSG for the info, i very much appreciate it.

So it sounds like, i could be in the therapeutic range but not respond, or respond at first then something throws me of track and flare but maybe the flare wouldn't be as bad as if i wasn't on 6MP?

I dunno, if the WOO thing doesn't get me some relief im considering nicotine next, if that doesn't work then 6MP is all i got left.

I just feel doomed.
Sorry for being so negative.
Posted 2/7/2014 4:00 PM (GMT 0)
I was on Imuran for about 6 years, never really got into full remission, but it did help. And it looked like it would be a drug I could stay on to keep things relatively controlled. But ... after years on it, I started having bad side effects from my immune system being so shot. I got meningitis, then pancreatitis. At that point, I was pulled off the Imuran and went on Remicade, which didn't work at all for me. Got a j pouch and feel great now!
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