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Starting 6mp, who takes it and how does it work for you?

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Ulcerative Colitis
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Posted 5/28/2009 11:01 PM (GMT 0)
I am stopping Remicade and starting 6mp. I don't know anything about 6mp.

If you are on 6mp, is it working for you, how long have you been on it? Does it stop you from flaring?

I am in remission currently (assumably from the Remicade) but had a horrible reaction. GI wants me to start
6MP now before Remicade is out of my system. He said I have to have blood drawn weekly for 4 weeks.

Just wondering what to expect from this medication.
Posted 5/28/2009 11:12 PM (GMT 0)
Well, glad that you're still in remission! Are you still using the other meds (besides Remicade, of course) that are in your sig? I can't comment on 6mp, but there are a lot of people on here who are on it, so hopefully you'll get some good info. The ccfa website (ccfa.org) has basic info on it if you want to read that.

Did they ever figure out what your infection was for sure, and is that all cleared up now?
Posted 5/29/2009 4:07 AM (GMT 0)
I didn't realize I hadn't changed my siggy, I just did!

As for the Remicade, two doctors I saw in the hospital thought the infection was Remicade related and my GI and primary care doctor think it is impossible to know for sure. I just decided I didn't want to take the chance of ending up in the hospital again with another infection. Plus they discovered an enlarged lymph node or mass in my chest and that really made me nervous. I am supposed to have another CT in 3 months to follow up with that.

I saw my GI today and he said if I don't finish the loading doses of Remicade, I can't consider it as an option in the future so he thinks I should start on 6mp right away because it can take several weeks to work. So I start tomorrow. I know a lot of people are or have taken 6mp so I thought I'd ask how others are doing with it.
Posted 5/29/2009 2:09 PM (GMT 0)

Before taking powerful drugs like 6mp, we'd all be wise to learn all we can about the pros and cons. Here are some links to help you:

 

http://www.webmd.com/drugs/drug-1370-Purinethol+Oral.aspx?drugid=1370&drugname=Purinethol+Oral&source=1

http://www.webmd.com/ibd-crohns-disease/immunomodulators-for-inflammatory-bowel-disease

http://www.dailystrength.org/treatments/Purinethol

http://www.chemocare.com/bio/purinethol.asp

http://www.merck.com/mmpe/sec02/ch018/ch018c.html

I was put on it back in the early days when I was flaring badly. I couldn't tell that it did anything to help my symptoms and, for me, it had frightening side effects - massive hair loss and nails developed strange, deep horizontal ridges. I got off it and began looking for alternative ways of managing my UC.

Posted 5/29/2009 2:46 PM (GMT 0)
If you do a search you will find a lot of stories from people on 6mp.

I have been on 6mp for 2 1/2 years. It took about 7 weeks before I noticed a change in my symptoms and I achieved remission around 3 months. My daughter then gave me a stomach bug and it threw me into a flare and it's taken approximately 1 1/2 years to get my current flare under control. During that time, my GI increased my dose and I was on several courses of steroid enemas. I had many Prometheus metabolite testing and it always revealed that I was at the low end of the spectrum for theurpedic levels. Somehow, I managed remission again even while still being at the low end. I am not sure if the flare "burned" itself out or if it was the 6mp that did it for me because I have changed nothing else in my regimine.
Posted 5/29/2009 5:37 PM (GMT 0)
I'm on 6MP since 6 months now and started with 75 mg. The side effects were unbearable and my blood work came back with bad bad results, so I was put on 50 mg. It seems to work for me, because I am usually flaring every 4 months. I got into remission around 3 weeks after first taking 6 MP (could be coincidence, but I don't think so, because I tapered of Prednisone while still badly flaring - it didn't do anything for me and whooops, flare gone after 3 weeks on 6MP). I think I have a flare right now, but it is "muffled" due to 6MP. I have 3 BMs a day, colon cramping, a bit nausea and that's about it.

I also lost a ton of hair in the beginning, but the hair loss has kinda stopped for me and the hair is growing back. The side effects that I still experience is bad facial skin (lots of zits), fatigue (can't do without naps and need more than 10 hours of sleep per night, otherwise I will feel sick), sometimes my legs hurt and I am not too keen staying outside in hot weather for long. Heat makes me feel super icky while on 6MP and the Texas summer is just getting started. I would say the most prominent thing is being tired and getting tired easily, but I don't regret taking 6MP. I will take it as long as I can handle it and as long as it helps.
Posted 5/29/2009 8:48 PM (GMT 0)
     I've been on 6MP for over six years.  The doctor put me on 75 mgm but my white count went down to 2.4 and I was not a happy camper over that.  I cut it down to 50 mgm and the white count (in March) went up to 2.9.  I go for monthly CBC's, liver function and pancreatic enzyme levels every three months.

     It is surprising to me that the doctor started you on Remicade before the 6MP.  Remicade is not an option for me because years ago I was exposed to the TB virus while working in a lab.

      I can only tell you how 6MP works for me.  I was diagnosed with UC in 98.  Started the 6MP in 03.  I still get flares every year or so.  As a matter of fact, they seem to be getting closer together.  My last flare ended Nov of 08.  I was hospitalized for ten days May of 08.  I am now starting to have symptoms of another flare, so back on the Cort enemas and Canasa.

     To be totally honest with you.  I think this is a hit and miss thing for doctors.  They have no idea what the cause is, therefore, no idea how to successfully treat it.  I do know that stress plays a big factor but not so much diet.  Also, my paternal grandmother died from rectal cancer and my dad had colon issues, so it definitely has some hereditary influences.

Posted 5/29/2009 9:57 PM (GMT 0)
They started me on Remicade first because I was hospitalized twice in a month for a bad flare and 6mp can take several weeks to work. I was already on (and not responding to ) 40 mg of prednisone. The IV steroids from the hospital would only last a few days. They wanted to use something that would work immediately and within a day my flare was under control. Even though I had a ton of anxiety about starting Remicade, when I was in the hospital the 2nd time, I was just about begging for it! I felt fantastic for 2 weeks then I had my 2nd infusion and 2 days later I was very, very sick. Because of the Remicade they were doing blood cultures and sending my blood out for every test under the sun. I was hospitalized 2 days later and now that I am well I don't want to do the next Remicade so my doctor really believes that I need to start 6mp right away.
Posted 5/29/2009 10:53 PM (GMT 0)
I started 6mp just about 4 weeks ago.  The side affects arent that bad for me with the exception of fatigue and dizziness.  I notice myself very very tired when I first wake up in the morninig for work which never used to happen.  Also, whenver I'm sitting down for a long period of time, I get very dizzy when I stand up to walk and almost have to hold on to something to stay up.  I'm currently on a 30mg taper dosage of Pred becuase of a pretty bad flare that I was in so Don't really know if the 6mp is working yet (I doubt it becuase it's too soon).  My Pred dosage should be done the first week in July and will then only have 1 month left of the proposed "3 month" period before it kicks in.

Good luck to you!

Posted 5/29/2009 11:07 PM (GMT 0)

Well, today is three months for me on 6 MP - don't know if it is helping as I am about same as weeks ago.  40mg. of prednisone for one week and 30 for another week brought my UC under control.  When I tapered to 15 mg. I started bleeding and cramping again.  No diarrhea and much less urgency and left-sided pain.  Doctor is keeping me at this dose until I see the specialist on June 18 unless things get much worse.  I can handle only 50 mg.  He wanted me to take 75 mg. of 6MP but everytime I try it - side effects are unbearable.  I do notice more fatigue but that is all on 50 mg.  On 75 mg.  after a few days I feel like I have the stomach flu - terrible!!  Anxious to see the specialist and see what he recommends.  It is only a consultation as it is far away.  I will continue with my gastro doc.

ElaineNY

Posted 5/30/2009 5:27 AM (GMT 0)
It took nearly 8 months for me to feel better on the 6MP. Now I'm glad I stuck with it. Been on it for about 3 years and I have had some flares but nothing as bad as before I started on it.

My doctor added Lialda last year and the two drugs together have worked really well and I had 5 wonderful months of remission. I'm fighting a flare now but i feel like I am doing much better at keeping it under control.

It did take about 6-9 months to get my blood work to be normal again.

I recommend trying it and keeping with it for a while to give it a chance.
Posted 5/31/2009 4:55 PM (GMT 0)
I've been on 6mp since early spring/late winter of this year; it hasn't done anything bad to me, but neither has it helped...

just a lot of blood work.
Posted 5/31/2009 6:01 PM (GMT 0)

AM - taking Asacol, Humira AND 6 MP - how do you know what is or isn't working for you?

ElaineNY

Posted 5/31/2009 6:52 PM (GMT 0)
     Elaine...when did you start Humira?  I am beginning to think nothing works..except having the colon removed.
Posted 5/31/2009 7:44 PM (GMT 0)

Sorry, Christine - you misunderstood (I probably wrote it wrong). I noted that AM was taking all those drugs and wondered how he/she knew which works and which one does not.  I am not on Humira - still on prednisone and 6 MP.  Waiting for June 18 appointment with specialist in Albany.  My UC is much better but certainly not in remission yet.

ElaineNY

Posted 5/31/2009 11:55 PM (GMT 0)
     Oh, ok...gotcha now Elaine.  I thought you were referring to yourself....AM taking...
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