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Ulcerative Colitis
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Posted 8/24/2010 3:28 PM (GMT 0)
My youngest brother had his wisdom teeth taken out yesterday, and is a "Nobody's ever felt like this before, I'm the only one in the whole world suffering and I'm going to let people know it" mood, and while I tried to tell him he only has to put up with his problems for a couple weeks, whereas I have to deal with mine for the rest of my life, and you don't see me complaining, it didn't work. He has no empathy. But that's not really what I wanted to talk about.

I went to my GI yesterday, and they want to put me on 6mp and take me off the Rowasa. I am going to do some research before I consent, but I was wondering what are your experiences with it? The Nurse Practitioner (that was who I saw) told me there's a 1 in 200 chance of pancreatitis, and a 1 in 200 chance of my white blood cell count dropping. Or something like that. I have to have a blood test done before they'll put me on it, and more throughout the duration that I'm on it.

I just looked 6mp up on Google and it took me to the Wikipedia page. While I know Wikipedia isn't always accurate, what I'm reading on there is kind of scaring me. The side effects: diarrhea- already have that; nausea- don't need that; loss of appetite- don't need that, either; hair loss- already have that, and if it gets any worse, I'm going to have to shave my head. Though, that might get me sympathy...No, that's wrong to even think about. There's also easy bruising, which I already have as well, and what scares me the most is that it says it may be toxic to bone marrow. And having to have weekly blood tests I think is a close second. I don't like taking prescription drugs as it is; I'm still convinced it's the Zoloft that caused my UC.

Can you all ease my fears with good things about 6mp? Please?
Posted 8/24/2010 4:14 PM (GMT 0)
I started 6mp a few months ago and while it hasn't helped my UC significantly, it hasn't given me any bad side effects. My GI did say that it helps the majority of people. For me, it has been much easier than taking all the 5ASA medication. It's one pill a day but it does require frequent blood testing, especially in the beginning. Of course, I'd prefer not to take it if I could control my symptoms with something else.
Posted 8/24/2010 6:46 PM (GMT 0)
You won't necessarily get all -- or maybe any -- of the side effects they have to list. Think positive!

My mother was the whiniest, worst patient after surgery to remove a tiny tumor just inside her skull. She woke up with a numb left arm. What a fuss!! I asked her, did they say it will get better? Yes. Are you in pain? No. And you're complaining???? (She regained full use of her arm again and is fine).
Posted 8/24/2010 6:58 PM (GMT 0)
I have also found that it may cause fertility problems, and I want more than anything to have kids. My fiance is against it for that reason. Not that reason alone, but still. I'm also one of those people that doesn't just get little colds, when I get sick, it hits hard. (case in point, the UC ;-) ) Granted, I did manage to get through the winter and spring without catching anything, even though I was around sick people a couple of times, including once while I was on the Pred. I've also dealt with my other brother having a cold this last week, and I haven't gotten sick yet. Maybe I'll do some more research and think about it more. wink
Posted 8/24/2010 7:21 PM (GMT 0)
Are you not being controlled by the 5ASA oral/rectal?

If you consent to the 6MP, I would still suggest you stay on the 5ASA oral/rectal, but taper to maintenance.

q
Posted 8/24/2010 8:24 PM (GMT 0)
I think I'm doing OK with the 4 Apriso in the morning and the Rowasa at night; I usually only have 3-4 BMs a day, split between the morning and the evening. They aren't formed, but they're not pure liquid, and I'm not seeing any blood or mucus, unless I eat something I shouldn't. But my GI doesn't want me using both for whatever reason. (I should of written it down...*forehead hits desk*) Even though I was only DX in December, I've been having symptoms for...a little over a year at this point, I think. I'm just sick and tired of being sick and tired.

I asked, and my GI said that, yes, I'd still be taking the Apriso. Another thing I found is that medications used to treat UC can interfere with how 6mp works and may increase the likelihood of experiencing toxicities. I'm just scared.
Posted 8/24/2010 9:44 PM (GMT 0)
Considering you were just diagnosed and showing improvement on 5ASA, see if you can continue.

You have a say in the meds you take....at the very least I don't see why the enemas couldn't be used...maybe even a steroid one of very low dosage or the 5ASA in 2g.

Personally...I'd not want to use the 6MP, although others have much success on it. It's a personal decision.

Why not give a longer go on the 5ASA oral/rectal.

for pancolitis, I think your meds are working...

q
Posted 8/25/2010 9:47 AM (GMT 0)
I have been on 6mp for nearly 6 months now and it has thanfully brought me in remission. I am also on sulfa bases maintenance drug and this seems to work so well for me. I have hardly any side effects, I had nausea at the start, but all that is gone now.
I would also recommend giving the 5ASA's another while and see if they are sufficient for you.
Posted 8/25/2010 11:43 AM (GMT 0)
What you read on the internet about 6mp is aimed at the true purpose of the this medication which is a treatment for cancer. This dosing is way higher then what we take. We take a miniscule amount compared to it's true purpose. I have been on 6mp for almost 4 years now. It has kept me out of severe flares, which were always rampant thru out the years and I am grateful for this med. I still flare but it is much more milder. My body can not process 6mp to the full extent but I am still getting some benefit from it.

In the beginning, I was very scared to start it too but after flaring extremely bad for 3 months I gave in. At first I had some fatigue, then headaches, then slight nausea...some mild hair loss started at about 3 months of taking it. Eventually all the side effects went away including the hair loss. The hair loss was very minor btw but I could afford to lose hair since mine is super thick anyway.

I went in for weekly blood testing in the begining, then bi-weekly, then monthly and now I go in every 3 months. Not once has my WBC dipped but I did have one test come back showing a high liver enzyme count but the next blood test came back good after that.
Posted 8/26/2010 5:52 PM (GMT 0)
Ok, I've decided I'm not going to do it, I'll just stay on the Apriso and the Rowasa. I called my GI's office and told them so, and am waiting for them to call back. I feel fine, I used the Rowasa last night, after not using it since...Monday, I think, and I actually didn't feel too bad that last couple days. I didn't take my Lomotil this morning, either, and other than the on BM I normally have in the morning, I've had a bit of gas and that's all. no urgency, no anything. I don't think I need 6mp. If things start going downhill, then I'll consider it, but I'm doing fine right now in my opinion, so why chance it?
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