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Ulcerative Colitis
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Posted 1/26/2009 12:29 AM (GMT 0)
Hello Friends!

I would love to hear some encouraging stories about how 6MP has put you in remission. I just got started on it while I was in the hospital. I have been so scared to take that step because wanting to have a child. But nothing was working. Prednisone, rectal meds, 12 asacol, etc. Anyway would love to know of how 6MP helped put you in remission? How long did it take? Did you have any wierd side effects? Any advice I would appreciate!!

Also why did you make the move to 6MP?

I have been on it now since Wednesday and so far I have had no side effects. I think I am just scaring myself....

Thanks!

Posted 1/26/2009 2:02 AM (GMT 0)
I have a success story and not so success story with my 6mp history. What lead me to 6mp was that I was enema steroid dependant. I couldn't get off the steroid enemas or I would flare and because I have an intolerance to mesalamines, my med options were limited so the doc brought up 6mp. It took 3 months of me heavily flaring that I made my mind up. I started taking it - like you scared to death. After 4 weeks, I noticed a slight improvement, at 7 weeks a more marked improvement and by 4 months, I was in total remission. It lasted for a good 8 months or so until my daughter gave me a stomach virus. I then flared, had to go back on steroid enemas. Once I got off the steroid enemas again, I wasn't in that great state of remission because I kept mildly flaring. So my GI tested my metabolites to see how I was metabolizing the medication. It turned out that I was at the low end of the theurpuedic (sp?) level so he increase my dose. Once again, it didn't really help and in fact he did another metabolites test and my levels never increased but he couldn't raise my dosage any because I was just below the liver toxicity level. So here I am today where I want to call it a remission only because I am not bleeding but I still have anywhere from solid to D 3xs daily with cramping. I sometimes wonder if my daughter didn't give me that stomach bug if I would've flared eventually anyway. I hear many people have great success on this medication so hopefully you will be one of them.
Posted 1/26/2009 5:42 AM (GMT 0)

Hi there-

I hesitated whether or not to post since I haven't had relieve yet, that is. I have been taking 6mp since mid Nov. and have not had success. I know that it takes several months to work, so I am still hopeful. I just started taking 100 mg and do feel nauseated, dizzy and headachey. WHen I was on 50 mg I had no side effects from the 6mp.

I am also on pred. down to 15 mg- but I am still in a rather nasty flare.

I think of it this way, if you have tried other meds and nothing has worked or meds have stopped working, you need to continue searching for some type of relief. 6mp is not as toxic as some other medications and perhaps this will be what finally works for you.

Good luck

Posted 1/26/2009 11:31 AM (GMT 0)
     I have been on 6MP for almost five years.  I still flare every year.  Last year was the worse...seven month flare.  I started with the flare beginning of April, by May I had to be hospitalized.  My pancreatic enzyme levels were extremely high at admission so the doctor took me off the 6MP.  By the end of my hospitalization (10 days), my enzyme levels had returned to normal.  When I went for my first follow up visit after the hospitalization the doctor put me back on the 6MP but carefully followed my blood levels.  This was in June.  I still was taking the prednisone too.  Couldn't get off the prednisone until Nov 1st.  The 6MP took that long to finally kick in.  My doctor said it takes anywhere from 3 - 6 months to take effect.  I saw a GI surgeon during that period and mentioned to him that I questioned whether the 6MP really does ANYTHING.  His opinion was that I would most likely be flaring a lot more without it.  wow.  I am not a candidate for Remicade because I was exposed to the tb virus years ago and I am not yet bad enough for surgery...so said the surgeon.  Sooo....I have been in remission...thank the good LORD since Nov 1st and feel great.  So...there is HOPE!!!  God bless.
Posted 1/26/2009 4:07 PM (GMT 0)
It has worked wonders for my son. I try not to worry about what the long term could bring, because watching my high school aged son suffer was hard to bare. I pray it is the lesser of two evils. You would never know my son has UC. He is doing just great. Never do I notice him in the bathroom. Sure he goes, but like a "normal" person. I consider 6mp the miricle we needed to overcome this disease. Good luck to you!! And wish us continued success:)
Posted 1/26/2009 4:13 PM (GMT 0)

I'm taking 6-MP since almost two months and the temporary side effects from it are nothing compared to being on Pred for just a few days. In the beginning I had daily headaches (tolerable, but annoying), slight nausea (eating Altoids helped me a lot), itching and tiredness. I am still tired after taking the pill (I take it at 6 PM) for the rest of the day, but it really helps me sleep. Other than that, I went to weekly blood tests for the first month of taking 6-MP and now I go biweekly and so far, everything is okay.

I started 6-MP while on Pred, because I had a bad flare (lasted 5 months and it is yucky heyday, I had 20+ bloody BM) and I am almost free of symptoms for at least a month. It might be conincidence or it might be that the 6-MP worked extremely fast in my case. So far, I don't regret going on 6-MP (and I was very scared myself) and if it does the trick, I would like to stay on it.

Just follow the instructions of your doctor and have your bloodwork done religiously, don't miss appointments and your doc will be able to take you off 6-MP early enough before something bad happens. But the decision is yours - after being so reluctant to take it, I wish I had started it sooner.

Posted 1/27/2009 4:09 AM (GMT 0)

Thank you all for your responses. ...Scarlet...your response def. has given me a lot of hope. I have been in a nasty flare since January 08. Been hospitalize now twice and basically never stopped bleeding..except in the hospital or on prednisone. I am dependent on steriod enemas. I am praying to god this does the trick. I actually only had proctitis until my scope the other day in the hospital. Now its moved into my sigmoid.

I worry though when I read all the other posts about it not working!! I also wonder...do people stay on 6MP for the rest of their life?

Christine....your case is very similiar to mine. I am glad to hear you are in remission since November. I have always meant to post that. You have been through alot. I just dont understand why we go on 6MP and then in your case would you have such a bad flare and have to be hospitalized? Is your inflammation still limited to your rectum?

Posted 1/29/2009 1:13 AM (GMT 0)
     Wishful...so sorry this is late.  We were in Atlantic City for a few days losing our money..lol...but,,,,having a ball!  To answer your question, yes, the inflammation is still limited to my rectum.  Guess I am one of the "lucky" ones here.  However, when I was admitted into the hospital the CT scan showed inflamation throughout the colon.  BUT, six days later I had a colonoscopy in the hospital and the results came back mild/moderate ulcerations in the rectum, not above.  I believe that because I don't have stomach cramping when flaring, just bleeding, diarrhea and the URGE to go all the time.   The prednisone increased my blood pressure to alarming highs and I think that really was the main reason they admitted me.  It was 210/110 and they had a heck of a time lowering it.  Prednisone does do that.  It was still high when I was discharged but not to that extent, so I called my cardiologist and he immediately placed me on a water pill along with the blood pressure meds.  It worked wonders.  Now why couldn't they figure that out in the hospital?  He said prednisone makes you retain fluid, therefore the increase in blood pressure...well, duh!
Posted 1/29/2009 2:35 AM (GMT 0)

WishfulMA,

I am supposed to stay on 6-MP for the rest of my life or until it stops working. Like I said before, give it a try and now I see that you're flaring since a year - geez, that's bad, how do you keep yourself from going insane?? Give 6-MP a try and don't be too afraid it might not work. I had the same fears, but just take it one day at a time. And like I said, have the bloodwork done religiously, don't skip them! The blood test will make sure your blood, liver and pancreas are doing ok and the doc can take you off 6-MP early enough before anything bad happens.

All the best for you!

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