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Need Advice/Thoughts on 6-MP/Imuran

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Ulcerative Colitis
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Posted 11/3/2008 12:27 PM (GMT 0)
Hi,

I have been sick with my UC for about 2 years now, not truly diagnosed until last march at which point i was put on Prednisone (which cleared up my flare and made me feel 'normal' again with very little side effects).  After trying several times to taper off of prednisone i was never able to get below 10mg without my flare starting up again.  my doctor has tried several things so far:

        Bentyl - Made me feel Loopy and didn't do anything for my UC

        Asacol - Can't Tolerate them and made my UC worse

        Entocort - Tolerated it fine but didn't do anything for my UC

My doctor has decided i am now 'Steroid Dependant' with my UC and has put me on 6-MP to try and help get me off of it.  He started me on 50mg which i did ok with.  Some nausea at night but if i ate something with it i was generally ok.  First blood work came back normal so he increased it to my regular dose of 75mg.  Right away i was nauseous all the time, no matter what i did or try.  Went for my blood work two weeks after starting the dose and the nurse called back and said they were a little concerned because my Liver Enzymes were very elevated.  I told them about the nausea and overall not feeling well and she told me to try splitting the dose to 25mg at breakfast and 50mg at night.  I went a week like that not feeling any different.  Called them back and let them know so they had me go for blood work again to check my liver enzymes again, and they told me to drop back down to 50mg until i heard back from them. 

Of course, the labs messed up faxing my blood work so they didn't get my results before the weekend, however i am still not feeling great even on the 50mg.  I seem to have a lot of nausea, indigestion and abdominal pain.  I do have urgency, but no D and my bowel movements have increased again.  I am waiting to hear back from them. 

She had mentioned that if this didn't work they would try me on Imuran as sometimes you can tolerate one over the other.  Has anyone had better luck with Imuran?  I am nervous to try it as it seems people seem to complain of more stomach upset with Imuran than 6-MP (I have a very sensitive stomach when it comes to medication). 

I guess i just feel at a loss.  My mom asked me when i felt my best since being diagnosed and i said when i was on 15mg of Prednisone, i felt human.  I know i can't be on prednisone for a long time but i just wish there was something else i could try that would make me feel 'good' again.  I am getting so frustrated and annoyed with all the changes in medication and none of them helping me as much as prednisone does.  I also feel guilty telling the doctors office that i am not feeling good as i feel like i annoy them. 

I am also planning on adding a probiotic to my regimen (just ordered them over the weekend so starting them this week). 

Any suggestions would be greatly appreciated, i am so frustrated right now!!!

Thank you!!

-Erin

  

Posted 11/3/2008 1:48 PM (GMT 0)
We have tried so many more things than you have, that you have a long way to go, and much that may work!
The 6mp will take a while if it is going to be effective. Have you tried rectal meds? The Cortifoam is easy and works right on the spots that need healing.
Maybe ask if the Colazal would be a substitute for the Asacol. Sometimes the right combination works magic.
Then there is Remicade....we are just new at it, but it is holding her. My daughter could not tolerate the Pred., and the side affects were dismal. I guess you should be glad that you still have something that works(Pred.). You might want another opinion for a specialist at a center of excellence/teaching hospital. Get all of your results and keep tabs on all that you do--poop,eat,drugs, labs, weight, and be prepared if you do go somewhere else.
Good luck, K
Posted 11/3/2008 4:53 PM (GMT 0)
Though I didn't try 6-mp first, I've been on Imuran over a year and am feeling pretty much normal. about 90% of pre-UC life I'd say. Feeling great and really appreciating what I've got (chronic diseases seem to do that.)
Posted 11/3/2008 8:54 PM (GMT 0)
I also went on 6mp to help with tapering off prednisone.  When I was at 100mg of 6mp my liver enzymes (SGOT/AST and SGPT/ALT) were up above normal.  I dropped my 6mp dosage down to 75mg and now my liver enzymes are fine in my bloodwork.  It's important that you keep getting bloodwork regularly.  I ask for copies of my bloodwork so when something is outside of the normal range I can see how far outside of normal it is and also compare trends in my bloodwork going up and down over time as my med doses go up and down.  I had some nausea when I started taking 6mp, I don't have actual nausea anymore but I don't have an appetite either.  I make myself eat 3 meals a day to maintain my weight.  If your liver enzymes stabilize, you might want to give your body a little more time to see if you'll adjust to the 6mp in other ways (like the nausea going away), because from what I read the possible side effects of 6mp/Imuran sound a bit less scary than those for remicade.  But if your liver enzymes get way out of whack, I'd go off of it (I thought about this when my enzymes were high but then they went back down when I decreased my dosage).  I know what you mean about feeling like you're annoying the doctor by saying you don't feel good!  When I list the things that still aren't right about my health, my doctor says that my UC is currently controlled "enough".  Something about the tone makes me sometimes feel like I'm being a complainer.  But I know that I'm not imagining not feeling well - my friends and family can tell when I'm healthy or very sick or halfway between, too. 
Posted 11/3/2008 9:18 PM (GMT 0)
I haven't tried 6mp as I was put directly onto Imuran after trying most everything else at the time that was available.  Many of us have had success with these drugs.  I read the side effects and was expecting "something" to happen.  I had been living on prednisone for close to 6 months and was losing my marbles.  Well..they were likely long gone.  The  bad "something" didn't happen.  I have never been naseous or tired..or gotten sick.  It took several months to be able to say I had no bleeding and wasn't going to the bathroom 20 times in a day.  It was gradual, and I had to have my doses adjusted a few times.

I also am very sensitive to most drugs..in fact..I need nausea medicine put in my IV after scopes or I will puke for a few hours.  But I had no stomach issues with Imuran.  I seriously count my blessings for sure.  I swear I couldnt really enjoy my small children for the first few years of their lives.

Good luck to you..

Michele

 

Posted 11/4/2008 8:30 PM (GMT 0)

Thank you for you replies!  I heard back from the doctors office yesterday from my last bloodwork and my enzymes are even higher than before so they dropped me down to 50mg and i have to go back for more bloodwork in a week to see if it brings my enzymes down.  I am still feeling nauseous and tired but i am sure it will take a little bit to re-adjust to the new dose?  If this doesnt seem to bring them down they are going to switch me to Imuran to see if i can tolerate that any better. 

Michele, I am so happy to see you are on Imuran and have not had any issues with it.  My stomach is like yours, i have to take Anti-Nausea meds with my scopes too or i am in the same boat...

Thank you all again!

-Erin

Posted 11/5/2008 2:20 PM (GMT 0)
I'm in sort of a similar boat, as I'm on the Prednisone and will be moving to Imuran. I'm currently on 40mg per day (split 20 morning/20 evening. I do this as the evenings are hell without the extra help.) Seems the Pred is strong enough to help with the day to day, but not enough to kick to remission. Perhaps over time it loses its effectiveness. I *think* a gastro I spoke to yesterday confirmed this, but her response was a bit confusing.

I'm ready to jump to Imuran at the hopes of triggering remission. Not sure what it does differently than Prednisone, but at this point the later isn't working...

Posted 11/5/2008 4:54 PM (GMT 0)

UC Fighter,

I hope the Imuran helps you, how long have you been on Prednisone?  I have been on it at various doses since January and can't seem to get below 10mg without it turning into a major flare.  I have to say i have been lucky in that i did not get many side effects from the prednisone so in a way i wish i could just stay on it safely (but i know i can't) because so far it has been the ONLY thing to make me feel better!  It is so frustrating. 

I am still feeling ill from the 6-MP and i go for more bloodwork today to see if my liver enzymes go down any being on the lower dose.  If not, they are going to have me try Imuran.  I really hope something helps as my doctor said no matter what he wants me off pred no later than December....ugh.

Posted 11/5/2008 5:14 PM (GMT 0)
I've been on Pred for almost a year and a half. (2 brief periods of nadda). I only flared up because I didn't keep up my maintenance (Asacol/Sulfa) ... live and learn I suppose. I don't really have any symptoms from the Pred (other than I get cranky at times, but I wouldn't have noticed if my wife hadn't told me).
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