Questions about 6-MP

I've read some of the other posts about 6-MP/Imuran, but I was wondering if you all would be willing to share your experiences with the medications. I'm supposed to start taking 6-MP next week. I've been on Entocort before, but had gone off it after about 9 months of use. I've been on Pentasa and Imipramine since then, but since going off the Entocort I've had flare ups. So my doctor thinks it is the best way to get everything under control for the long term is to go on 6-MP. So I'm going back on Entocort for two months until the 6-MP starts working.

Some of the side effects have me a bit concerned since I'm in law school right now. Our law school seems to be a breeding ground of colds and whatnot. I'm afraid of going on this medicine and getting really sick from a basic cold. Has that really happened to anyone? Is there anything you can do to boost your immunity while on the medicine?

What have all your experiences been like? Has it helped a lot? I'm just really interested in what real experiences are like with the medicine as opposed to just reading about how the meds work.

Thanks in advance!!

Until recently, I was on a small dose of 6mp (50 mgs) on and off for 17 years. When I could take it, 6mp worked great for me. I I am one of the very few who "is allergic" to it. Ie. my red or white blood cells would plummet and I'd have to get off the drug for a while. I never really had any adverse reactions to the drug except that.

It was extremely helpful for my fistulas and my lower bowel disease. I had no issues with pancreatitis or any other side effects other than the low blood counts. I did drink alcohol.

At several points, my GI's office would call and tell me my white blood count was a little low. So I'd get out the hand sanitizer (a constant on my desk and in my bag) and avoid crowds. Never shared drinks. Washed my hands a lot. Washed fruit and was VERY careful near salad bars. When visiting other folks' homes, I never use the guest towels--I dry my hands with tissues. Avoided eating samples at a grocery store and kept my eye on how people handled hors d'oevres at a party. I never had to wear a mask. At times when my counts were low, I did avoid gyms, didn't hold the escalator rail, and left crowded places where folks were coughing. I have a harder time getting rid of colds than most, but I think all of us Crohnies deal with that. If I spotted someone at a party with a cold, I'll admit, I did try to avoid them and still do. But, for the most part, while on 6mp, my health was very good. Again, my dose was low. I have known folks to take up to 150mgs a day and do very well.

The blood tests are very important. In addition to your WBC and RBC, your doc will be monitoring your liver. You'll do the blood tests every few weeks at first and then once a month and then once every 2 or 3 months. If at any point you feel under the weather or spot a rash developing, be sure to call your doc. You'll want to nip any adverse reactions quickly. best of luck to you.

Hi I have been on Imuran for almost 5 years and I have no-side effects from the drug.

Five years plus on 6mp here as well, 50mg. I have had no adverse effects and very good therapuetic effects. A last scope in December the GI kept poking around in the cecum saying "I really can't find any sign of active disease here" and finally located a very small ulceration and some mild inflammation in the terminal ileum, so it has worked very well for me. Yes there are some side effects thta hit a very small miniroty of patients -- primarily white blood cell supression -- but your regular blood tests should detect that early if it happens. Overall it is one of the most consistently effective long term treatments for Crohns and works well for most people. The one thing to be aware of is that it can take up to 90 days to really reach effectiveness as it gradually ratchets down your immune responses.

First I have to say that it is amazing what science has discovered in autoimmune disease medicine! Who would have ever thought that supressing your immune system would actually make some people well! LOL

Anyhow I started 6mp in Nov...I guess I am closing in on the 90 day mark where it is suppose to kick in. To be honest I have felt so much better the past 3 weeks then I have since October when I begain to flare.

I am at 100mg a day (thats 2 pills every night). I have had no side effects at all which is the best part...My daughter has had an array of colds in which I took days off of work to care for her and I never got ill. My partner and a number of our friends have had that nasty flu bug that has gone around and I slept in the same bed with him and did not catch that either.

From my experience so far it seems that the precautions and warnings are given because those things do happen in a very very small number of patients, but as my doctor told me a few years before I was put on the drug is that the longer they use 6mp in treating Crohns patients the more they find that their innitial fears are unfounded.

Anyhow Im looking forward to getting my life back on track, getting back in the gym, and living a healthy active lifstyle again. I have found that I go to bed about two hours earlier than I use too. But I attribute that to the fatigue caused by having active disease, and not the drug itself.

Good luck!

I've been on 50 mg per day of 6MP for about four years now. It has definitely reduced the inflammation (and hence the narrowing) in my terminal ileum. If it's producing side effects, I don't know about them, since most of them are the same as my Crohn's symptoms (nausea, diarrhea, lightheadedness). I have been totally reckless with my own health and safety, doing things in the toxic post-Katrina environment that should have killed me many times over. (I'm not kidding about this. You don't even want to know!) But I've only gotten sick once, with a respiratory virus. My doctor just says that I must have an amazing immune system, since it seems to be operating so effectively even with a daily drug to suppress it.

I have blood tests and liver function tests every three months. The 6MP has done nothing to relieve all my horrible Crohn's symptoms, but neither has anything else I've tried. Still, since the drug has helped to prevent any further obstructions since my surgery in 1999, I'm happy to be on it.

Lil-momma-

I've always heard 50mg per 50lbs. I am 115 and when I was on it it was 100mg. 150 sounds very high.

I was on 6mp for more than three years and it was my wonder drug. Even in a law school that bred germs I got sick less when I was on it (I did get flu shots). I was in remission within months of starting 6mp and never had side effects. I only stopped to get pregnant.

My dose was always adjusted by bloodwork. You should be monitored frequently, especially in the beginning. I was usually on 75mg (120lbs 5'9)

brit tuck said...
Is the 50mg/50 lbs normal? I know that my doctor said something about me being "intermediate to normal" so he couldn't bump me up as high as possible, but I'm definitely not anywhere near 115 and the most I can go up to is 75mg. Is that really low?

Sounds about right to me, i am on 250mg at 240lbs , so that ratio is about normal, the recommended therapeutic of Imuran for Chrons in the big medical book of drugs says 2.25 mg/kg which is about 1.02mg/lb

However, as far as i know from reading these boards, there are more ppl who cant then there are that can handle this dosing, it seems i here about many more ppl having to lower their imuran doses because of toxicity problems whereas i could probably handle more the 250mg/day. All depends on the person, maybe your doctore thinks you cant handle the full dosing? or maybe your kidney/liver counts are already low to begin with?

Well thats the main reason for keeping on eye through the forms of blood tests is too make sure they arent putting you on too much. I am just making an assumption about the counts since it would be obvious in my mind that if you already had borderline liver or kidney counts that they wouldnt go putting you on a full dose right off the bat. For me, my kidney counts and liver counts were exceptional, (Creatinine Clearance and Creatinine levels were exactly where they were supposed to be, liver counts were nice and low, which i credit to the fact i havent had a drink in 6 years, dont eat any junk food or food containing bad fats/cholestorol blah blah and spending my life in the gym) so my doctor didnt think twice about giving me the full dose, and sure enough, my pre-Imuran and post-Imuran Kidney/Liver counts were unchanged, which is good...so in the case of you, i would assume your GI would have some reason to believe you dont need the full blown dose, and i think the only thing that would give your GI that kind of information is a blood test to see what your current condiitons were Pre-Imuran

brit tuck said...
I know my doctor mentioned I was in the intermediate to normal range, as far as the dosing. But I wasn't aware that could possibly be because my counts are already low. Do you think I should be concerned about that if the medicine starts working? Or just make to sure to definitely keep an eye on things? Thank you all for your help!

Have any of you noticed itching while being on the medication? Over the past few days I feel really itchy.. almost like there's always something like a hair on my face or just something that makes me start to itch. Sounds kind of strange I know. Also, I feel like my acne is all of a sudden getting worse. But that could also be because I recently changed my birth control. Anyways, I thought if anyone knew the answers you guys would.

Also, I ended up calling my primary care doctor's office to let them know I was on the medicine and also to ask when, if I ever needed to, I should have to call them about having colds. They basically just said if I had a fever is when I should come in. I've had a bit of a sore throat but I haven't thought much of it so I'm leaving that be. If only I wasn't so tired! One step at a time though. :)