6 mp- just prescribed

Hi,

First time on this chat site and needing some emotional and drug support. After having uc for 43 years ( that's right and plenty of suffering etc) the old stand by drugs, Colazol etc  are no longer effective. Was Rx'd with 6 mp today and as a nurse, read all the side effects. Have already experience chemo for breast Ca 15 years ago with many unpleasant memories. Is this as bad as that was? Dr. says no but I am skeptical. Prednisone has caused osteo porosis so cant stay on it.

Any help would be greatly appreciated from your experiences with this drug. Many thanks...

adrienne

Hi Pigtail - Welcome to Healingwell. I think you'll find a lot of great advice and support on the forum. I know it's helped me a lot, especially when I was faced with the same decision you are faced with - to start 6MP.

I started taking it taking 6MP 5 months ago. I was told that it takes 3-6 months to "kick-in". I was also on prednisone at the time and was slowly tapering off it. My UC was already fairly stable from the prednisone, but I had already been on and off (mostly on) it for two years and needed to try something else. Because I was already stable, I didn't notice a huge improvement from the 6MP, but I was extremely tired. I knew this was common, but I didn't know how much of it was medication related vs. just being tired from working full-time and from having a toddler. Well, now five months later and being fully off of the prednisone for two months, I feel great! The tiredness has gone away and I'm newly pregnant! Now I know if I get tired it will be pregnancy related and not 6MP. My UC has also never been better. One sometimes two formed BMs a day.

My advice to you is to give it a try. It's a big jump from the traditional medications, but I figured I might as well try it. If it didn't work I would have to find a different solution.

It will probably take some tweaking to find the right dosage. My GI had me start with a small dose for my weight 50 mgs. He increased it to 75 mgs after two months, but then my liver wasn't tolerating that dose, so now I alternate 50 mgs one night, 75 mgs the next.

Good luck and I hope you start feeling better soon.

Thanks to all of you wonderful, caring, fellow uc sufferers... I am anxiously reading your replies to my delema of going on 6 mp and your experiences of taking this drug. Am happy to hear it has helped you. Thinking of going to Mt. Sinai in NYC for an opinion as to whether this drug or Humara is the drug of choice. any experiences with that?

Thanks to all, again for your replies,

Adrinene

This is very helpful for me to read as well. Thank you all! Our little girl is only 8 yo and is about 65 lbs (now that she's gained 15 back after sever UC flare). She's been on the generic 6MP for 4 months and doing great - or so we thought. We had some blood work sent to the lab in CA and I guess her body isn't metabolizing it as much as expected. But her symptoms are gone and she's down to .5 mg prednisone a day. So a little thrown when they prescribed the brand name 6MP Purinethol and also now alarmed at the dose - 100 mg a day! She went straight into zombie land the very day we started giving it to her. Took her off of it for 2 whole days and she's back to normal. Now today, we put her on just one 50 mg dose and she seems very tired and having hot flashes from her neck up. Weird, huh? Can I chalk this up to a normal reaction? Her UC symptoms still not around, we are thankful for that!

I am 100 lbs and I'm taking 50 mg of Azathioprine everyday. My doctor wanted me to increase the dosage to 100 mg but I refused. I think I'm doing fine with 50 mg per day.

Piper-Chris:  Thanks for the info.  We've put our daughter down to 50 mg/day per Dr orders and her blood work (SED rate and CRP) are improving.  We had it done during her symptoms of 6MP overdose and the blood work is beginning to come down - drastically, yeah!  She has blood drawn every 2 weeks as well, though a CBC is done only monthly.  All the liver tests have come back normal, thankfully. 

Since starting the brand name 6MP her appetite has been gone.  Even on the half dose of 50 mg.  I'm concerned about that but grateful that the UC symptoms are still at bay.

The generic 6MP was called Mercaptepur while the brand name is Purinethol and the tablet says it on there along with "04A" on each one.  The Dr in LA says she hopes our daughter will metabolize the brand name better.  I was always under the impression that a generic is the same as the brand name.  According to her that's not the case.  Scary, huh?  We thought she was doiing fabulous on the generic as she's been symptom free for 4 months.  But I guess the blood work indicates that her body is less likely to absorb the meds thus less chance of continued remission.  Thus the switch to the brand name. 

Really concerned about the loss of appetite.  Down to .5 mg prednise daily.  Can it be chalked up to that or do any of you remember having appetite adjustments when switching to a new/different 6MP?  I'm worried it may be an early sign of starting a flare?  In the past her flares are instant joint pain - like totally swelled ankles and knees, and unable to walk.  Wheelchair for a couple of weeks until the prednisone would kick in then back to walking.  Also the instant diarrheal w/bloody mucus.  In the past there's been no easing into a flare - just a fast process.

Thanks Irish Mom! She's just been acting down in the dumps since she started the new 6MP. Prometheus also did her testing and on the generic 6MP her levels weren't where they wanted them. So we threw her on 100 mg of this new 6MP but have backed down to 50 mg since she got dizzy, light-headed, lethargic, kind of spacy, etc.

Leaving on a road trip tomorrow, hoping that she improves. Her UC symptoms are non-existent still.