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Deciding if 6mp/Imuran is right...new ?s and approach

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Crohn's Disease
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Posted 9/11/2007 8:30 AM (GMT -8)
Sorry I keep asking about the meds, but I have a new approach to my decision making.  I am going emotionless  scool now and making a pro/con list of just the activities of daily life.  I am just going to look at the impact on my life as is.  So, how do you who take the meds answer the following--feel free to just give me quick answers to save your time tongue

1) Can you eat a smaller/same/wider selection of foods since taking 6mp/Imuran?

2) Do you have less/same/more stomach cramps?

3) Do you have less/same/more bloating?

4) Do you visit the potty less/same/more?

5) Do you go out less/same/more as a result of the meds?

I know this is a very simplified way of looking at taking the meds, but it helps me to look at things this way before I weigh the other factors.  My local CCFA meeting is next week and I plan to ask them similar questions, but you guys are a much bigger test population!

Posted 9/11/2007 8:49 AM (GMT -8)
Good questions, I can't wait to see the results since I have been wondering the same questions. As you all well know, I too am asking lots of question about 6mp, since my son's GI keeps on insisting about making him take it. I will watch the answers closely. Thanks HabsHockeyFan.
Posted 9/11/2007 9:53 AM (GMT -8)
I have fairly mild disease so I may not be a good test subject, but since going on 6mp five years ago I would estimate a 60-70% reduction in active symptoms. Two scopes in that period have also shown only one small site of minor inflammation and ulceration in the cecum, with low-level but persistent inflammation in the terminal ileum.

Posted 9/11/2007 9:59 AM (GMT -8)
My doctor keeps insisting I take 6MP but I'm totally hesitating. I'm interested in seeing these questions answered by those who have expirience w/the drug.

There are local CCFA meetings?! Wonder if there is one in my are. Can I find out through the site? Haven't come across it before...

Posted 9/11/2007 11:01 AM (GMT -8)

I have been on the 6mp for a year.  I started 6 months after my diagnosis and after my firsts serious flare after fistula surgery.  Did I notice a difference, yes. I am in the bathroom less, my stomach pains are not as severe and I am more consistant in the consistancy of each bowel movement, that is the biggest difference for me.  Now, let me also say that I have had 3 major flares in that year and 1 minor one, thankfully when I am in flare mode, I don't have as much abdominal pain as I have read other have, but I am achy and in the bathroom constantly.  Are the results what I want them to be? No, I want to be normal and that is the part I struggle with most, what is normal for me.  I would say that I have noticable improvement since beginning this treatment that I did just being on Pentasa in the early stages of my diagnosis. The side affects aren't such that I would caution you away from it.  I think things have been pretty managable.

Best Wishes

BMG

Posted 9/11/2007 11:23 AM (GMT -8)
I have been on imuran for almost 3 years...

#1 I eat anything and everything!
#2 Never have had stomach cramps.
#3 Less bloating.
#4 Less visits.
#5 More outings.

I am also on remicade, but I noticed a difference in all of those, when I upped my dosage to get me in my theraputic range.....it made a huge difference.
Posted 9/11/2007 1:49 PM (GMT -8)
Been on Imuran and Remicade for 3 years. Started them at the same time. Difficult to tell which med made the most difference but if I had to assign one over the other, I would guess the Remicade.
1) I can eat almost everything except Romaine lettuce. Prior I could not eat raw fruits, vegetables, cereals, nuts, popcorn, etc.
2) Lots fewer cramping episodes. Rarely have them now, only if I eat Romaine!
3) Much less bloating
4) From 15-20 BR trips a day to once a day or every other day
5) I had basically become housebound by my disease symptoms. I am free to jump up and go whenever I feel like it now.
Posted 9/12/2007 4:13 AM (GMT -8)
SadMom and Nazeha....yup isn't it a pain to have to make these decisions when you son't really know what will happen. If you ever need to chat about making a decision, give me a post.
Nazeha...CCFA has local chapter meetings in many places. Unfortunately, some were discontinued due to lack of participation. Check the ccfa website under your local chapter to see if there are support groups in your area. If there isn't one, I would recommend trying to get one started. I love this site for the pure size of members and variety of input---and especially the humor. However, I found face to face contact with people who knew my docs and hospitals really helpful.

Thanks for the input everyone! Anyone else want to weigh in???
Posted 9/12/2007 8:13 AM (GMT -8)

I am on the fence on this - YES it definitely helped after my last flare, my only downside is that I tend to get severe sinus infections on this and it can take a few months and different drugs to get rid of it.  I also tend to feel like I have a constant yeast infection from it.

I am off right now (have been since April) due to severe Sinus infection that I could not fight,  and I am just now starting to notice that I am running to the bathroom a lot more, feeling tired, etc.  So I am not sure if I want to go back on it or not.  I am getting some bloodwork done this week to see my SED rate, etc is and that will also factor into my choice of going back on or not.  I really don't have any other choices at this point - it is Immuran or Prednisone.  Remicade is a no go to me due to the fact that I also have Lupus, Humira - don't know yet. 

My biggest complaint would be the yeast infections when on it,  but then my biggest complaint being off of it is that when I went off it abruptly my menstual cycles and hormones were wacked for MONTHS - I mean to the point of having PMDD, it has just finally gotten back to normal 7 months later, my drs theories are that it took almost 6-7 months to get completely out of my system.

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