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To 6MP or not to 6MP...that is the question.

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Posted 9/9/2010 6:03 PM (GMT 0)
I've got my GI appt. next week and I know this question is going to come up. Ive done fairly well on Pentasa with a round of Prednisone every couple of years. After having a long flare and getting "clear" this spring, I'm finding that Im starting the tell all signs of another new flare. ( I believe after a bad bout of constipation and a round of laxatives that literally took me out!)

Ive read so many things about 6MP/Immuran that scares me, but Im really at a point where I would like to be flare free for more than 9 months.

Who ever took the plunge..are you glad you are on it or do you regret it?
Posted 9/9/2010 6:10 PM (GMT 0)
You have a tough decision to make or it might be made for you. I am trying to avoid 6 mp by balancing enemas, canasa and Asacol. Seems to be working, but if I cut back on enemas, I can see the signs of a flare. As Quincy said to my post, I could give all that up, go on 6 mp and "be done with it," but I'm not sure that's the way I'd like to go. Flaring every nine months is a lot especially because you have to get on prednisone so you may have to do 6 mp
Posted 9/9/2010 6:24 PM (GMT 0)
I was on it for a while, but it didn't help my symptoms and had some scary side effects - hair falling out, nails growing strange, deep, horizontal ridges.

I've had much better success managing symptoms and staying flare free with alternative methods, although I do take a maintenance dose of sulfasalazine. The last time I had a mild flare - a few years back - a short course of pred and high doses of probiotics got me back into remission.

Posted 9/9/2010 7:02 PM (GMT 0)
onebumgut:

The way it's been explained to you it's not  that simple.  I was on  Asacol with the on and off again prednisone.  The ASA meds couldn't contain my UC, it spread to give me pancolitis and my colitis was bad.  Over the course of 8 years my colon kept getting worse with a lot more bleeding, etc...  The ASA's can only do so much, for a lot of people they have to jump to the next level of Rxs only because the ASA's can't cut it and get their colon under control.  It was only when I went to a different GI doc that I was told I was steriod dependant and even pred wasn't touching it anymore, not at any low doses, etc...  He put me on the Imuran and I have been in remission for about a year with no side effects.  The blood work has been spotless and when I pressed my doc for what can happen to pts on 6MP/Imuran he really had nothing bad to say at all.  He said it either doesn't work for people and those people know that right away because they feel sick or it works extremely well and it works for a long time.

I regret not going on it earlier.  UC robbed me of many years of good times becaues I was afraid of having accidents.  Now I feel like my pre-UC days.  I have a colonoscopy next month and my doc and I expect a 100% healed colon.   Iwould like to simply be on ASA's but they couldn't control my UC, Imuran did.  I can eat anything, go anywhere and not think about my UC at all for an entire day.  My doctor is very pleased with my result.  He said the Imuran worked exactly like it supposed to.  He also told me it was a safe drug and it has a long track record.  I even know of a GI doc who has his daughter on Imuran for the last 12 years.  If it's good enough for his kid, it's good enough for me.

Good luck with your choice.  If you have questions I will try to answer them.

MyUC

Posted 9/9/2010 7:50 PM (GMT 0)
I have been on a low dose (50mg) of Imuran for 21 months. I could not get off pred without flaring. It took three months to get me out of the flare and off Pred. I had no side effects. Blood work has been good. In the last month I have had my first signs of a renewed flare, but I attribute that to stress I`ve been under and I think I have avoided the full flare.
For me it worked at a low dosage.
Posted 9/9/2010 7:54 PM (GMT 0)
I'd prefer 6mp over having to take prednisone every 9 months. I take 6mp and I am not sure it is helping my UC. I am hopeful but it's been a few months and I am stil feeling pretty unstable. Regardless of whether it is effective, I do not regret my decision to try it. It hasn't caused me any terrible side effects, I am on a low dose. It's easier to take than Asacol because it's once a day. If I could manage to be flare free with 6mp, I'd be a happy camper.
Posted 9/9/2010 8:14 PM (GMT 0)
I took pred once, and I will never take it again.

I don't plan on taking 6MP either.
Posted 9/10/2010 8:05 AM (GMT 0)
I have been on 6mp for 6 months and it's working great for me. I am finally able to leave the house and go places, without worrying where the closest toilet is :)

I am on 50mg a day and haven't had bad side effects at all. When I started it, I did have bad nausea for a while, but it faded away and I now take it in the evenings before bed...
Posted 9/10/2010 1:02 PM (GMT 0)
I've been on 6-mp since January 04. I've had excellent results and can eat and drink what ever I want. I haven't had a flare since I've been on it. I do have fatique issues but the doc doesn't know if it's from the medicine, arthritis or colitis. I just take it easy some days and make sure I get enough sleep. That's easy for me as I work part time and the kids are out of the house. I know I'm lucky that way. Years of prednisone use have taken a toll on me with early onset osteopenia and other issues. I'd take 6-mp over prednisone anyday. Using 6-mp worth a try and not as scary as you might think. It's been wonderful for me.
Posted 9/10/2010 1:09 PM (GMT 0)
I take azathioprine which is very similar (gets converted to 6mp in the body).

Absolutely no regrets. No side effects so far except nausea if I don't eat with it, and I've been symptom free for about 8 months now (that's long for me).
Posted 9/10/2010 1:12 PM (GMT 0)
Great replies everyone! My appt. with my GI is Wed., so I'll see what he says.

I guess for me its always been a matter of "I dont have it so bad..I dont need those strong(er) drugs.". My UC has always been pretty "livable". Not affecting me too badly. Yes, I do have some really bad days. But most days I forget about it. Im so mad at myself for this latest flare. 6 hours after I took a laxative for some constipation and I had cramps so bad, they made me throw up, I knew it was going to trigger a new flare. PLUS..I've always been a "seasonal" flarer, so it's no surprise that within in the last week, Im in a full bore flare again. YuCK!

And having had this disease for over 16 years, Ive tried lots of different meds. Prednisone has always worked for me, but I think Im ready to try something new.

Thanks for the great advise. Here's to crossing my fingers. I'll keep you posted as to how next week goes. :)
Posted 9/10/2010 1:21 PM (GMT 0)
Keep us posted!
Since hearing from people here, I have decided that if my UC becomes more active, I'd definitely go for the 6-MPs. My GI has a number of people on it who are doing very well and have been for a long time.
I think for me, my past resistance to it has been a combination of fear of the unknown - whether medications or whatever - and the psychological hangup of "oh, no, I'm worse and progressing up the ladder" - which is silly, considering the nastiness of "traditional" pred over and over again. Which is to say, my resistance has been emotional and not logical, and I've gotten my head around it.
Thank you to those who share their success stories and have helped me so much! As with anything, it's easy to understand the "bad news" we read as the rule rather than the exceptions.....so the good stories help a lot.
Posted 9/10/2010 1:29 PM (GMT 0)
Another quick question for those on it..
What dose did you start on when you first went on it. I want to gauge what the doc suggests for me...
Posted 9/10/2010 1:39 PM (GMT 0)
onebumgut,

quick question for you and something to think about...based on your signature, you have left sided UC but are on pentasa. If I remember correctly, pentasa starts to release in the small intestine. I am wondering if the drug is even getting to where you might need it. Just something to think about.
Posted 9/10/2010 1:46 PM (GMT 0)

onebumgut:

I  can only speak about Imuran (parent compound of 6 MP).  As I am sure you know people with UC usually take a higher dose of Imuran than 6MP to get the same result.  My GI doc prefers Imuran over 6MP, don't ask me why because I keep forgetting to ask him.  For Imuran most docs will start with 50 mg and work themselves up in 50 mg intervals over months to get to the desired dose, usually 100 to 250 mg with 150/200  mg being the average dose depending on your weight.

I am assuming 6MP is done in a similar fashion but I am sure someone here who actually takes it will post soon.

MyUC

Posted 9/10/2010 5:42 PM (GMT 0)
NiRo,

When I was first diagnosed, I took Azulfadine for 6 years. That stopped working, and my doc put me on Asacol, which did absolutely nothing to help me. He decided to try Pentasa because at the time my UC was classified as Pan Colitis. Pentasa has just really worked for me over the years. Not sure why. It was weird and good I guess, but the last 2-3 coloscopies I've had have show my UC just to be Proctosig UC.
Early this year, my doc (a new GI) decided to have me try Lialda since I was in a new flare and it was a new med. After 2 weeks of really bad nausea and feeling horrible, he put me back on Pentasa and pred. which got me out of my "Spring time" flare.

MyUC, I guess I should have stated too that my doc called it Azathioprine, which I think is Immuran. I think I need to educate myself better on the terms. i thought 6MP was a general term for all of these immune modulator meds. :)

Thank you again everyone! Love this site. I have an awesome husband, but I know he gets tired of me talking about my issues when Im in a flare. Its nice to know that I can sit down at my computer literally any time of day or night and know that there are others up in the middle of the night in my same circumstance. .....
Posted 9/10/2010 6:41 PM (GMT 0)
Cool - just wanted to make sure you were getting a 5-ASA that works for you. I'm glad you have.
Posted 9/10/2010 11:50 PM (GMT 0)

onebumgut:

Imuran is the trade name for the generic Azathioprine, exactly the same thing.  Otherwise known as Aza.  We are here 4 U.  Ask any question and we will try to answer.

MyUC

Posted 9/11/2010 12:30 AM (GMT 0)
I was thinking of trying it too. How bad is 6mp compared to 12 pills of asacol a day? I'm having less blood and bathroom trips, but I'm not normal in any means. My worst complaint beside constant trips to the bathroom is the gas that builds up all day. It got to the point the other day I couldn't breathe it was so bad on my left side. I left breakfast at a restuarant to go to the car and lay on my left side to fart for mins on end! Then of course that brings on the poo so I had to run back into the restraurant, if anyone was seriously watching me lay in my back seat and fart, they would have to know what I was doing on all fours! I can't fart with without liquid being there.

I was invited to a concert, but you have to stand the whole time and I turned it down because in the evening I'm ususally in pain from gas and need to lay down to let it pass. UC has consumed my life and I can't stand it....its always in the back of my mind, what if I have to poop because it comes on so urgently. What a way to live, it sucks!

I've been flaring for 5 going on 6 years and when I was supposibly in remission, I was having accidents all the time and pooping my brains outs still!

I'm thinking of doing the 6mp, I don't want infusion, I would like a pill. I'm scared I'll really be messing up my system.

So if you take 6mp then you don't take a 5asa?

Posted 9/11/2010 12:37 AM (GMT 0)

therearemiracles said...
I was thinking of trying it too. How bad is 6mp compared to 12 pills of asacol a day? I'm having less blood and bathroom trips, but I'm not normal in any means. My worst complaint beside constant trips to the bathroom is the gas that builds up all day. It got to the point the other day I couldn't breathe it was so bad on my left side. I left breakfast at a restuarant to go to the car and lay on my left side to fart for mins on end! Then of course that brings on the poo so I had to run back into the restraurant, if anyone was seriously watching me lay in my back seat and fart, they would have to know what I was doing on all fours! I can't fart with without liquid being there.

I was invited to a concert, but you have to stand the whole time and I turned it down because in the evening I'm ususally in pain from gas and need to lay down to let it pass. UC has consumed my life and I can't stand it....its always in the back of my mind, what if I have to poop because it comes on so urgently. What a way to live, it sucks!

I've been flaring for 5 going on 6 years and when I was supposibly in remission, I was having accidents all the time and pooping my brains outs still!

I'm thinking of doing the 6mp, I don't want infusion, I would like a pill. I'm scared I'll really be messing up my system.

So if you take 6mp then you don't take a 5asa?

I notice that a lot of people are on both. I was only on 6mp for a while and things were OK but not great and they were headed downhill. I am now taking Asacol and 6mp and I am doing much better. I am not sure what is going on. Maybe the lack of 5ASAs was making my UC more out of control the whole time I was off them? Maybe the antibiotics I took did something? Maybe the 6mp is finally working? I don't know but now I am stuck on 6mp and Asacol. I wish I could stop one or the other.

Posted 9/11/2010 2:41 AM (GMT 0)
There is no general rule per se.  Meaning one can just take ASA or take 6MP/Imuran or one take both of them at the same time.  Different GI docs practice differently.  I am only taking Imuran, nothing else.  No probiotics, no enemas, no ASA's.  I asked my doc as to why he only has me on the Imuran and nothing else.  He simply said we try different approaches and sticks to what works.  Because I am in remission with just the Imuran what would be the point of adding the ASA's?  If things change then we can add them as neede.

MyUC

Posted 9/11/2010 11:37 AM (GMT 0)
There's some small evidence that azathioprine's effect is lessened by 5-asas and that the interaction of the two can lead to certain side effects.  The combination is definitely something to discuss and monitor with your doctor.
Posted 9/11/2010 11:52 AM (GMT 0)
6mp dosing is half of what Imuran is. So if you are on 100mgs of Imuran, that is equivalent to 50mgs of 6mp. They are the same medications, just broken down differently. Imuran breaks down to 6mp, that is why a smaller dose is needed for 6mp.

I have been on 6mp for 4 years after not being able to get off steroid enemas for nearly a year. At first it worked good, I noticed a marked improvement but then for some reason I found out that my body can't metabolize it right. I can't get into the thereudic (sp?) level that is needed to stablize me. I am always at the low end so I am getting some benefit from it, just not what is needed to keep me in remission. I can't increase my dose either or I fall into the liver toxicity. So I am in that small category that it sort of works but don't.

If you decided to go on Imuran, I really hope it works for you. It's sort of a pain to start it though because you have to go for frequent blood testing but once you reach the proper levels, your blood tests should become further apart. I go in every 3 months now.
Posted 9/12/2010 7:54 PM (GMT 0)
I am on 6MP and am doing really well. I started out at 50 mg. then went to 75 mg. where I have been since May. ASA's weren't working anymore so this was the next step (although I had a really bad reaction...ended up in the hospital...from Imuran, but I think that was a dosage issue). I have lost some hair, but I have a lot. I do have some nausea (had to take a anti-nausea pill last night) and have a lot of joint pain. I go to the dr. on the 22nd to see if this is a side effect or UC related arthritis. Otherwise I am very happy with the medication. In fact, I was thinking this morning that I need to take some fiber because my BMs are so firm. What a change! Good luck...and get all your blood tests done. It is very important.
Posted 9/16/2010 4:27 PM (GMT 0)
So I had my appt. with my Gi yesterday. I left feeling very good with a plan of attack. ( I love having a doc that takes a lot of time to listen and answer questions!)

So rather than going straight on the Imuran right now. He wants to do a quick sigmoidoscopy to check things out. (I dont even have to prep!!! whoo hoo) From that we will see how inflamed my insides are and then possibly do a small/quick round of prednisione to kick start the healing. Stay on my Pentasa and then start on a low dose of Imuran to get the build up started. Based on comments in this thread, I asked him his thoughts on combining the ASA's and Imuran. His answer was that he has hundreds of patients that are on both and he has not noticed any lessened effect of the Imuran due to the ASA. So I guess that issue is very subjective to each doctor.

All in all, I feel good about having a plan!! Fall time is usually the start of my flares (small or large), so Im happy to have some good ammo to nip this in the butt! (pardon the pun...)

M
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