Starting 6mp and scared

TotesMagotes, I was in a similar boat as you. I was already at the maximum effective dose of Meslamine (5g Lialda a day, plus a nightly 4g Rowasa) and then I flared. My GI put me on pred and 6mp, with the goal of staying on pred until the 6mp worked to full effect (which takes 1.5-2 months).

I have been on 6mp since the end of January 2013. I have had no side effects whatsoever. I know some are worried about getting sick on an immunosurpressant. I haven't been sick yet, even though people around me at the office have been going through bouts of colds and the 24-48 hour flue.

The GI started me at 50mg a day of 6mp, and scoped me on Tuesday. Certainly, I am nearly back to pre-flare symptoms now (I was at 12-20 bms a day at the worst, and now I am back to 3-4 a day). I went from severe inflammation (at start of flare) to moderate which is still too much despite the improvement in physical symptoms. So he upped me to 75mg of 6mp, and we'll recheck in 4 weeks.

Well, as I said the flare is just about gone (symptom wise), so the combination of pred and 6mp worked fairly well. I started the 40mg of pred the 2nd week of January 2013 and it kicked in fairly quickly but my improvement plateaued after the first few weeks of being on it (no better and no worse) I held stead at the same pred dosage. I started the 6mp a week later but it took he 6mp took about a month until I think I noticed continued improvements from the aforementioned plateau. I started tapering pred beginning in March and I got down to 15mg a day before seeing my GI this past Tues. He did a scope and bumped me back to 30mg of pred and increased the 6mp to 75mg. I'm now to hold at 30mg of pred until the end of April when he'll do another scope and see where I stand at the higher dosage of both. They prescribe 6mp using a 1-1.5mg per KG formula. He started me at the low end of that scale. He then boosted me to the high end of that scale.

I have blood tests every two weeks, CBC and LFT, which will be that frequent until I get off of the pred at least. All of the blood tests are normal so far.

Yeah pred sucks but what can you do? At least my side effects from it have been only a mild nuisance.

Thanks sciencegirl. When did you start the 6MP?

My GI discussed remicade as an addition to the 6MP today as well.

Are you in or close to remission? How are your UC symptoms?

I was in your shoes once :) I literally stared at my bottle of 6mp for 2 hours before I took my first dose. I was so scared to get on it. But I had no choice sadly. I was on 6mp for 6 years. I remember it took about 7 weeks before I noticed a difference. Unfortunately I was never able to get into the therapeutic range that it never worked right for me. But it did keep me out of severe flares. I was always "simmering" which is why I am on Remicade right now. I was actually on 6mp and Remi at one time but I had to stop the 6mp because it was causing me to develop a foot neuropathy. I really wished it worked like it should've of for me though.

I have been on 6mp for over a year and I have been doing really well. It's definitely scary to start something like 6mp and I never desire to do so, in fact I avoided it for as long as possible but eventually it was this or stay on prednisone longterm and that was not a realistic option. I got to the point on pred where I really didn't like myself or the way I looked and I would have done anything to change my perception. If I didn't get to that point, I don't know if I would have considered 6mp but i am happy I did consider it because it has helped me immensely as far as I can see. Hopefully I continue to feel well & I hope you see great results too!

I started Imuran on December 5. It has helped, but my doctor is still trying to figure out the correct dose. I don't think we've hit maximum efficacy yet. I was terrified of trying it and put it off too long. The blood work isn't that bad..and I used to freak out about it. Now, it's normal. The blood work shows my White blood count (WBC) decreasing, which is really good. However, I have anemia. Not horribly bad, but bad enough. I'm now on iron pills (with Vitamin C for absorption). I was really scared about picking up colds, etc. on this. Ironically, besides my UC, this has been my healthiest winter ever. I am SO careful with handwashing and touching doorknobs, elevator buttons, etc. So, with vigilance, a lot of illness can be avoided.

Here's the real proof, though. Last week, I took a 2400 mile ROAD TRIP with my family to look at colleges for our daughter. I DID IT! The first 2 hours of the morning are always a little hard for me, but after that, I was fine. I don't think I would have been able to do that without the Imuran. It took about 6 weeks to start working and the pred taper was hard. Stick with it. Be vigilant about not picking up germs. Good luck!
~Coco

I was scared to death too and ive had zero problems so far. As long as you have your blood tested regularly you shouldn't worry about a thing.

My daughter has been on 6MP for well over 5 years. She started taking it at the age of 8 ('07) when she was first dx. She is now 14. She has spent most of that time in remission. A flare in '09 and a blip this past November, but other wise she has done great on it.

Make sure to have regular blood work done to monitor your white counts and liver/pancreas counts.

She also take generic colozal with it (see all her meds below.

My son has been on a related drug (azathioprine) for almost 6 years and has done quite well, too. He used to flare every single year and since starting it, he gets 2 years between flares.

I totally get being scared about being put on it - I cried when my kids had to start these meds, but in hindsight, they are living full, nearly normal lives. My daughter just made the cheer squad and my son has been having a blast living in a Frat house for the past three years.

Good luck and I hope it helps you as much as it seems to my kids.