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Nervous about starting 6MP

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Ulcerative Colitis
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Posted 6/28/2012 2:57 AM (GMT 0)
Hi everyone,
I am currently having my first serious flare after having ulcerative colitis for the last 8 years. I'm currently going through the most stressful time in my life as I am moving, my mom lost her job, my boyfriend of 3 years broke up with me, I'm going to college full time and working full time. All of this happened within the last month. After my boyfriend broke up with me I stopped taking my meds because I just didn't care about anything anymore. I know how foolish that was I wish I didn't do it.

But anyways, for the last month I've been having bloody loose BMs and a few weeks ago I lost my appetite and couldn't eat at all. I lost 15 pounds and it came to a point where I started to throw up everything I ate including liquids and I landed in the hospital because of dehydration. My doctor started me on prednisone in the hospital and I've been taking 40mg since then (2 weeks).

My doctor doesn't like that I still have bloody diarrhea and wants me to start 6mp. I am very nervous about that because it sounds like once you start taking 6mp you need it to maintain remission for ever. Since 5ASA drugs worked so well for me my whole life I don't want to become dependent on an immuno-supressent. Especially because of the side effects - it can cause a fatal leukemia particularly in teenagers/young adults who are taking it for irritable bowel disease. Even if it is rare, is it worth it? In a week I am going in for a colonoscopy where my doctor can get a better look at whats going on.

Does anyone have any advice? Has anyone be able to get off 6mp and maintain remission with 5ASA after a serious flare? I just wish that I could get back to normal without going to heavier drugs.
Posted 6/28/2012 3:21 AM (GMT 0)
Sorry you're going through so much all at once. Stress does bring out the worst in UC.

I took 6mp for a while and it didn't kill me. It didn't help me either but it does work for some people. However you should also be using rectal meds and if your doctor did not suggest Rowasa (mesalamine enema) he is not doing a good job.

In my opinion if you have not used any rectal med (steroid or mesalamine) you could give that a try first along with the prednisone and possibly a different oral med than 6mp. Give that a 2 week trial and see if the bleeding gets less.

What is your UC diagnosis, where is your inflammation located?
When was your last c-scope?
What oral meds were you taking successfully before things went bad?
Posted 6/28/2012 3:26 AM (GMT 0)
I do take meselamine enemas, and they used to clear up my flares instantly. But now it takes even longer for them to work. But once its under control with the enemas and asacol it stays that way for years. My UC is lower left side, most times only the rectum. My last c-scope was 3 years ago and it only showed proctitis and a relatively normal colon. Before everything went bad I was taking Asacol 400mg, 6 tabs a day and a nightly enema. I feel like once my life settles down again, which will be soon everything will go back to normal. I'm going in for a C-scope in a week.
Posted 6/28/2012 4:16 AM (GMT 0)
5ASAs became less effective for me over time and I eventually had to start 6mp. It was a really difficult decision for me. I put it off for as long as possible. I was on steroids and miserable. I had gained a lot of weight and didn't feel like myself. I wasn't in the position where I could wait any longer. Either I started 6mp or I was going to continue gainign weight and become less and less happy. The risk of cancer is very low as far as I know. We take a very low dose of medication. I take 25mg and it seems to keep my UC stable. I am not saying it's great either, I've had a lot of trouble with my WBC but at the same time, I am thankful for the fact that I've had a break from UC for over a year. Mesalamine was onnly effective for me for about a year, then I had a major flare up which required pred. I couldn't taper off. 2 weeks on 40mg and still having symptoms is definitely worrisome. If you started to taper, you would probably end up going backwards. That's an opinion.

What are the options?
Adding a steroid enema?
Going to a higher dose of pred and trying to control this?
tapering and hoping things dont get worse?
trying alternative treatments? probiotics, LDN, antibiotics
getting stool tests and treating something if it's found?
starting 6mp and hoping you're off pred in 3 months and you don't become dependent and deal with load of side effects?

They are all options and I am sure there are many more, you have to weigh the pros and the cons. I got to the point where I had tried tapering over and over again and prednisone became the worst evil of them all.
Posted 6/28/2012 5:52 AM (GMT 0)
You post sounds so similar to how I felt a few months ago. I was diagnosed in 1999 and didn'e even use Mesalamine and was in remission most of the time. I can't take any 5 ASAs so my options are more limited than yours. I have been on Prednisone most of this year and I was left very little choice. I started 6mp maybe 7 weeks ago. It took a lot of time for me to finally agree to it. I am still nervous being on it. However the anxiety is less than it was before I started. I just knew I had to get the UC under control and the Prednisone was not doing it. I chose the 6mp over Remicaide. So many people seem to take it and it does not harm them. I had to leave it to God, it is out of my control.

NOt many words of wisdom only sharing that I can relate and I hope you can get some healing real soon.
Posted 6/28/2012 12:03 PM (GMT 0)
NSSG said:
The risk of cancer is very low as far as I know.

Most of think of Cancer with a big C but I experienced skin cancer after 6 months on 6mp and in my mind it was related to 6mp because I used sunblock 30spf everywhere (for many, many years) because I live in very sunny Florida. It was a very painful procedure to remove it from my leg and I never want to repeat that again. It was squamous cell type not the normal kind you zap with freezing, it was cut out.

I'm not saying this to discourage anyone from 6mp. But be vigilant about signs of cancer including getting a skin exam every year. Skin cancer can kill. I'm sure my incident of cancer was not reported regarding 6mp so there may be more unreported cases of cancer than the warnings indicate.
Posted 6/28/2012 12:52 PM (GMT 0)
     I took it for 7 yrs and I am still alive.  I was only on 50 mgm. When the doctor increased it to 100 mgm is when I had a severe reaction.  It did keep me in a two yr remission when I first started.  I believe I was also on prednisone and it took 3 months to "kick in".  However, after those two years I started to flare yearly, then twice a year.  From 2008 until my surgery in 2010, I was in a constant flare.  Tried Remicade and Humira too....nothing.

     On a happier note....I have a friend who was on the 6MP for ten years and it kept her in complete remission yeah !  Her doctor took her off the med, don't ask me why, and she immediately went into a flare.  She is now doing well on VSL#3 and Rowasa enemas.  The best of luck to you.  By the way, stress is the evil culprit in your situation.  I can bet on that!

Posted 6/28/2012 12:59 PM (GMT 0)
I was on 40mg of pred for 3 weeks before I saw any signs of improvement. So hang in there for another week at least. Have a backup plan though. Get your blood tests lined up so you can start 6mp right away if you need to.
Posted 6/29/2012 10:37 AM (GMT 0)
Prednisone is far more dangerous than the doses of 6mp/Imuran that are prescribed for UC.
Posted 6/29/2012 12:52 PM (GMT 0)
Just like Seasons, I was really scared to start it too (I'm on Imuran, not 6mp).  But I've been on it for about 4 1/2 weeks now and I think it is making me feel better.  I think just that alone - finally feeling a bit better after 6 months flaring - has started to make me less nervous about taking it.  I can honestly say I get way more side effects from my Prednisone than from Imuran. In fact, the only time I notice side effects (tiredness) is when I reduce the Pred each week. Once that subsides, I'd say I have no side effects from the Imuran which even makes me less scared to take it.   I definitely feel more nervous about being on Prednisone for so long - especially seeing how just reducing it 5mg can cause so much havoc on my body. 

I've used the 5ASAs the entire time I've had UC (over 18 years or so) and they were able to keep me in remission till recently.  The disease changes over time so not all drugs seem to work forever for some people.  I wish I could keep taking the Colazal and Rowasa forever too but they did progressively work less over time.  I guess just take one day at a time and focus on getting better. Once you are feeling better you won't think so much about taking the drug, you'll just be happy you can have a normal life! :)

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