New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Eddie K.
Regular Member


Date Joined May 2008
Total Posts : 27
   Posted 6/4/2008 2:05 PM (GMT -7)   
Hi All,
 
I'm fairly new to the forum and have found it extremely useful to see how others cope with CD...Although I was diagnosed with CD in 1990, I've never met a fellow cronie before!
 
In light of some of the stories I've read, I clearly don't have much to complain about.  My diagnosis came during surgery which then put me in remission for ten years...In 2001 I started having flare-ups and obstructions.  I've tried most drugs (except Remicade) but nothing work as my issue was primarily related to scar tissue in the anastamosis region and so I ended up with a second resection in 2004. 
 
All was well until two months ago (from 02, I've tried SCD but not much else) when I got a flare-up and partial obstruction which showed as being primarily inflammatory in nature in a CT scan.  However, my doctor told me that I have 'fibro-stenotic' CD which, as I understand it, means I'm at high risk for developing obtructions / strictures.  Although the usual therapies are less likely to work, controlling any inflammation is key to preventing my gut tissue from developing fibrosis which eventually leads to obstructions (and more surgeries).
 
Given the above, I was wondering if anyone would care to comment on two things:
 
1- anyone with a similar diagnosis? if so, how have the fared with different therapies, diets and how much remission time did their resections buy?
 
2 - what's the experience with 6MP as a monotherapy (which my doc wants me on again before trying any anti-TNF; I'm currently on 15mgs of Pred)?  what's the longest people have been on it? do the benefits outweigh the slow onset of action and potential lymphoma risks?
 
In advance, thanks for your help.
 
 

MikeB
Veteran Member


Date Joined Mar 2006
Total Posts : 1169
   Posted 6/4/2008 3:06 PM (GMT -7)   
I can't comment on your disease state, as I do not have obstructing disease. However, I am one of many on this board who have been on 6mp. I use it alone (50mg daily) and have for about six years now, with very good results -- only the occasional miniflare of a day or two. At my last colonoscopy in December the GI had to look and hunt to find any sign of disease activity in my colon; he finally located a small half-healed ulcer near the ileocecal valve, although we sure I do have some mild inflammation up in the small bowel. Overall my 6mp experience has been excellent, and while the lymphoma factor is always there, I for one believe that the same or greater cancer risk would stem from uncontrolled active Crohns inflammation. As for gradual onset of therapuetic efects, it's just one factor about 6mp we have to accept. Many GIs will start a patient on 6mp or its sister drug Imuran and keep them on pred or some other medication for a few months until the new drug hits its stride.

Eddie K.
Regular Member


Date Joined May 2008
Total Posts : 27
   Posted 6/4/2008 6:09 PM (GMT -7)   
Thanks. That's very useful info; your positive experience certainly makes me feel more comfortable with trying this..
Only question is how did you end up at 50 mgs? My doc wants me to start at 75 and reach 100 once my blood counts look ok..Is dosing related to weight?

inflamed
Veteran Member


Date Joined Nov 2005
Total Posts : 1340
   Posted 6/4/2008 6:25 PM (GMT -7)   
I also have stricturing/obstructing CD. 6mp was my wonder drug. It put me in remission w/in months and kept me there for years (still there). I never had any side effects from it (3+ yrs). I stopped the med to have a baby and am still in remission.

My GI also wanted to avoid the remicade/humira drugs. The big concern was that my main stricture is so severe I could not afford anymore scar tissue that would result from the fast healing those drugs produce. I've never been too worried about the lymphoma thing w/ 6mp. It's a risk with the other drugs too (FDA just began looking at those in kids due to Lymphoma risks). Plus, on 6mp we get much lower doses than transplant patients who have been studied for a while.

Good luck if you try it. Make sure to stay on top of your bloodwork.
Currently in remission!


dustspeck
Veteran Member


Date Joined Sep 2007
Total Posts : 565
   Posted 6/4/2008 8:42 PM (GMT -7)   
hello eddie and welcome. i am also on 6mp, have been for about 7 months now. i have noticed improvements, down to 10 bm's a day(from upwards of 20) on a bad day and less acute upper abdominal pain. i still take percocet on the regular. and yes, the 6mp mgs are based on your weight. i am currently awaiting to increase my dose from 75mgs to 100mgs (i am 106lbs so it's kind of a high dose but we want to try one more increase before i try humira or remicade or possibly surgery) but i am switching my insurance and can't afford to pay for weekly blood work. but anyways, it's been a positive drug for me. the adverse effects for me have been: thinning hair, some fatigue and i swear, it's making my face break out though i haven't read that's a side effect anywhere. if this next increase doesn't work i mat be talking to a surgery to remove about 8 inches of strictured intestine.

but good luck to you! keep us posted on your progress :)
.: stephanie :.
32 y/o female diagnosed 8/8/7 with crohn's of the terminal ileum w/ stricture/scarring
meddies: 6mp, percocet, trazodone, ativan, iron, calcium, folic acid & some other vits


epeters
Regular Member


Date Joined Feb 2004
Total Posts : 28
   Posted 6/4/2008 11:34 PM (GMT -7)   
I was on 6MP for years, I can't even remember how long (Maybe 5 or 6?) I even took it throughout my first pregnancy and had no side affects and my son came out just fine. It's definitely worth a shot. I finally had to go off of it for breast-feeding.

Good luck to you. I understand it's always scary starting a new medication.

Eddie K.
Regular Member


Date Joined May 2008
Total Posts : 27
   Posted 6/5/2008 8:25 AM (GMT -7)   
Thanks to all. This and the other recent thread on 6MP certainly makes more comfortable with the drug...I agree the lymphoma risk is there for CD to begin with and other drugs as well (just concerned since, as if CD was not enough, I already had a cancer scare..) I can only hope it starts working sooner rather than later..

Jason D in MN
Regular Member


Date Joined Jun 2008
Total Posts : 54
   Posted 6/5/2008 9:39 AM (GMT -7)   
As always discuss your personal cancer risks and family medical history with your GI doctor.

As for my personal experience with 6MP over the last 25 years: I can take it or leave it. I have ADHD as a complicating factor so I can end up forgetting to take it for months at a crack which clearly doesn't help. I have been on it for years at a time -- with minimal numbers and lengths of lapses of memory -- where it seems to help quite nicely and other times where I still developed strictures or fistulas which eventually required surgery. I've also been in remission for years at a time with no stricturing while on no Meds... Since the last surgery (in 2005) I've never really stayed fully in or out of remission so my GI Dr bumped the dose of 6MP to the max mg/kg, and that seems to have helped.

For the down side. I tend to get sick more often while on 6MP, nothing serious or life threatening. Also, It elevates my liver functions, but never outside of the normal range; but it is enough for me to avoid alcohol... no more than 3-4 drinks PER YEAR. (I had a spike in liver function a couple years back...)

I also have IBS on top of Crohn's which confounds my ability to say *for sure* if I'm in a Crohn's flare. I just contact my Dr if I suspect I may be Crohn's; he orders blood work which is usually pretty much dead-on for clearling up the question of IBS vs Crohn's. (Sed rate, white count and CRP are elevated when in a flare...)

From all the great comments I've seen about 6MP over the years, it clearly works well for most people. So the important question is "which of the two is the greater risk: " Death during surgery or contracting lymphoma?"

From stat's I've seen dying during surgery is more likely than contracting lymphoma from 6MP. To boot, Lymphoma is treatable, and not a death-sentence. Crohn's patients on 6MP are monitored more closely than the average person for this, which means if you contract it, and you're keeping your appointments, it's likely to be caught sooner than in the general population, which increases the odds of survival a lot.

FYI From the literature I've read the cancer risk with 6MP tends to be 1 in 1500 or less (I think). Across all populations, you have a roughly 1%-5% of dying everytime your belly is split open for a resection. I've not found any stats specifically addressing mortality rates for resections on Crohn's patient. (That would be a more accurate comparison...)

I hope that helps.
-- Jason
Diagnoses? Crohn's in 1983; Kidney Stones in 1997; Reactive Airway Syndrome in 2002; Major Depression and GAD in 2003; Migraines in 2006; ADHD and IBS in 2007.

Current Meds? 6MP; Adderall; Wellbutrin; Zoloft; Albuterol (emergencies only); Fexofenadine; and Epidrin or Imitrex (depends on migraine severity...etc)

Overall: Things are So-So. In other words "It could be worse. It could be raining."


Eddie K.
Regular Member


Date Joined May 2008
Total Posts : 27
   Posted 6/5/2008 10:26 AM (GMT -7)   
thanks Jason. I like your analysis on lymphoma vs. surgery risks....

Jason D in MN
Regular Member


Date Joined Jun 2008
Total Posts : 54
   Posted 6/5/2008 11:01 AM (GMT -7)   
Thanks Eddie. I've struggled with the same question a lot in my life. So a while back I finally bit the bullet and started looking up the statistics... I realized I was neither being an idiot by worrying about it, nor being smart by refusing to use 6MP. (Which I had for a number of years...) So yeah I learned all that the hard way. I'm just glad college was the period of little to no meds+remission. (I was the typical college student...)
-- Jason
Diagnoses? Crohn's in 1983; Kidney Stones in 1997; Reactive Airway Syndrome in 2002; Major Depression and GAD in 2003; Migraines in 2006; ADHD and IBS in 2007.

Current Meds? 6MP; Adderall; Wellbutrin; Zoloft; Albuterol (emergencies only); Fexofenadine; and Epidrin or Imitrex (depends on migraine severity...etc)

Overall: Things are So-So. In other words "It could be worse. It could be raining."

New Topic Post Reply Printable Version
Forum Information
Currently it is Saturday, December 03, 2016 8:53 AM (GMT -7)
There are a total of 2,732,069 posts in 300,986 threads.
View Active Threads


Who's Online
This forum has 151152 registered members. Please welcome our newest member, JesperTrottier.
246 Guest(s), 10 Registered Member(s) are currently online.  Details
imagardener2, Michael_T, ASAdvocate, ks1905, colitisteen98, Traveler, JamesE, Mister Mike, multifacetedme, joee


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer