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Ulcerative Colitis
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Posted 9/9/2010 4:02 PM (GMT 0)
Just had my GI visit and based on my flare symptoms not gone he has now prescribed me mercaptopurine. I have only had 2 infusions of remicade and told him how just before the 2nd infusion some of my symptoms had returned (bleeding, cramping).  He felt I wasn't responding as quickly to the remicade and more prednisone dependent than anything.  I'm on 40 mg prednisone and today he is reducing it to 30 mg with the 50 mg mercaptopurine.  I don't have any experience with this medicine - but concerns me a little when the warning says 'hazardous drugs require thorough hand washing after handling'.  I also see this is typically used for cancer treatment based on the drugstore literature but has been prescribed for UC and Crohns.  I would appreciate any experiences with this med that anyone might share ie. side effects.  I see one of the side effects could be hair loss.  i'm hoping that doesn't mean like the way cancer patients respond to chemo. 
Posted 9/9/2010 4:08 PM (GMT 0)
6MP is a safe drug; far safer than prednisone and Remicade, I believe. The dose for UC patients is much lower than for cancer or transplant patients. I took it for 1.5 years with no side effects. It didn't get me in remission but it has helped a lot of people.

Sue
Posted 9/9/2010 5:57 PM (GMT 0)
I've been on 6mp for 4 years and you may lose some hair in the beginning but once your body gets used to it, it should slow down and eventually stop. But also very common is fatigue, headaches and nausea when starting this. Once again, when your body gets used to it, these side effects should subside. I'm not sure what sort of blood testing you need with the Remi but with the 6mp, you will need frequent blood testing in the beginning to be sure your liver is handling it ok.
Posted 9/9/2010 7:18 PM (GMT 0)
Thanks - they don't monitor blood levels with the remicade (at least for me anyways). I'm glad to hear that this is better than prednisone as that has been driving me crazy - lack of sleep, jitteriness (just started getting shakey feeling), and the puffiness in the face. Also noticed started to break out as well a little. Am looking forward to ditching the prednisone - won't be too soon!
Posted 9/9/2010 7:47 PM (GMT 0)
I am on 6mp and I agree with the others, for me, I've had very little side effects. I think I am more fatigued but that's nothing new since I am always on the sleepy side. I am surprised he is going to decrease your dose of prednisone so quickly after starting 6mp. 6mp doesn't work instantly, it can take a few months to have theraputic results. For some, it doesn't seem to have much positive benefit. I am not sure it is helping me at all.
Posted 9/9/2010 8:28 PM (GMT 0)
Imuran has helped me a lot.  No UC symptoms whatsoever.  Good to live life like your not sick.  The dosage we are on is typically 3 times lower the amount that transplant patients take.  No side effects at all.  It's good knowing that my colon is normal in terms of clinical and histological terms.  You are either the surgery camp that would never take 6mp/Imuran or Remicade and would just up for surgery or your the type that will exhaust all drug options first.  I am of the second type.  I am glad I went on it and have no regrets.  In fact I wished I had started it sooner than suffer for all of those years with badly controlled UC.

MyUC

Posted 9/9/2010 11:49 PM (GMT 0)
Thanks for the info. I am with you MyUC - I would much rather do the meds first before opting for surgery. Surgery is sooo final. I'm glad to hear not much side effects. I know that doesn't necessarily mean I won't but - I'm hoping not. Especially the hair deal! I don't know what the usual protocol is for stopping prednisone - but I gathered that my GI didn't want me on high levels for long. I am remaining out of work for an additional week - he left it up to me. Since I am still flaring and my meds have not been finalized - i'm concerned about jumping right back in with fast pace and high stress and getting set back. I'm hoping I'm making the right decision to take it slow. I still get the left side cramping that I take acetominophen for and still getting the mucous - so I'm not back to my pre UC flareup condition. I would appreciate peoples opiinion whether it matters or not jumping right back into things while still flaring as this is my first major flare that I have dealt with for some time and ended up being hospitalized with it. Thanks!
Posted 9/10/2010 12:07 AM (GMT 0)
equinepeace:

It's nice to know someone out there thinks like me.  So many people here hate the immunomodulators and/or biologics or I should say they merely don't want to use them.  I understand the risk/benefit ratio and stuff and maybe because I am in the health care field already I have a very close and personal yet professional relationship with my doctors.  Meaning I don't call them dr. so and so, I call them by their first name.  We talk like friends who have a common problem and we don't mince words, we tell each other like it is.  I ask them, straight up, what's the skinny on the 6MP/Imuran or Remicade stuff?  They tell me with no other purpose other than being honest that many people do very well with these meds and they use them years if not decades with no issues.  This allows them to spare their colon and avoid surgery. 

 Mind you no one, myself or my doctor friends, is against surgery.  If it comes to that I will do what I have to and not be angry or have regrets.  I just want to exhaust my pharmaceutical options first.  I also ask my doc/friends what they would do given the same situation.  They all say they would do the 6mp/Imuran and if necessary remicade route.  They see how patients lives improve and even the meds fail they often fail after years of solid remission.  I also believe in the notion that once people get into remission they don't visit this place as much or not at all.  In fact I have started to wonder what am I doing constantly writing here when I can just enjoy my remission for as long as it lasts.  If I run into troulbe I will run to this forum like a selfish friend and ask for help and advice.

I realize the approach to this situation is very personal.  I am just sharing with you that Imuran has worked for me with no side effects, just benefits.  No hair problems at all.  In closing I am not sure I understand what you mean by jumping in?  Do you mean with life and work while flaring?  If so I definitely would.  I would try to overcome the situation by doing what is important to oneself and to try to not let the UC control you. 

I wish you the best.

MyUC

Posted 9/10/2010 12:18 AM (GMT 0)
My jumping in was regarding work. My position always results in an average 12 hour day with an additional couple hours at home. Extremely stressful with high demands, not to mention all the other stress of being a caregiver to a disabled husband (result of cancer). My GI told me today that they know stress contributes to flares and can make them worse. I know once I return to work my stress level will be right back to where it was that contributed to my current flare. Just not sure whether I should concentrate on getting stronger, clearing up my symptoms and then subject myself back to the stress of work or just go for it. The thing i would love would be back to my normal routine with no UC symptoms - be in remission and do /eat whatever I want. lol
Posted 9/10/2010 12:25 AM (GMT 0)
I hear you equinepeace.  Sorry to hear about your husband.  I guess we do the best we can.  It sounds like your doing the right thing by carefully evaluating your approach.  I understand you had your first Remicade infusion on the 16th of August?  Any since then?  How is the UC at this point?

I am not sure on how to advice on your question.  Get stronger then stress or just go full throttle and deal with the stress with the possibility of flare.  I am leaning towards going full throttle and making sure your on top of your meds.  The meds should work stress or no stress.  Then again I don't know the specifics of your situation.

Again, all the best.

MyUC

Posted 9/10/2010 8:01 AM (GMT 0)
I have been on 6mp for 6 months or so and have to say it has changed my life ! I am finally in remission after I struggled for nearly a year, with formed stools and hardly any urgency.   I did have quite strong nausea at the start, but that faded away after a while and now I take my tablet in the evening and it seems to suit me better.   I would encourage you to stick with the 6mp for a while and see if it makes any difference and remember to get your bloods checked regularly.  
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