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Crohn's Disease
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Posted 3/2/2011 2:49 AM (GMT 0)
Hi to all!

In my previous posting I have told you that I am newly diagnosed with CD (coincidently via regular colonoscopy), although I have no symptoms. But all the subsequent tests point in the right direction, it is CD and I have no doubt.

Now, after much consultation with more than one doctor, I think that I have been convinced (although fighting) to start 6 MP. This medication scares the hell out of me, after reading about it, it is not clear to me what is worse for my body, the illness or the medication. Anyway, it seems that I have no choice, or do I?

So my question to those of you that have been exposed to 6 MP, what am I suppose to expect when I start taking the medication? And, since I am writing to you, an additional question: what sort of a diet, if any, should I follow since I do not have any symptoms?

Again, I appreciate your input.

Erwin 

Posted 3/2/2011 4:32 AM (GMT 0)
I was on 6MP for many years and it worked well for me with minimal side effects. You will probably find that your GI puts you on a dose in the range of 1 to 1.5 mg/kg which is less than the dose for many other people who take this drug for reasons other than CD. 3% of people get reversible pancreatitis in the first few days. If that happens you just simply stop the drug. Give the drug some time and see if you tolerate it.

As for diet I would just keep eating as you are, as you're asymptomatic. Good luck!
Posted 3/2/2011 1:06 PM (GMT 0)
6MP could be a really good drug for you. It takes 3 - 4 months to build up in your system, so people who are flaring badly need other meds alongside to get through until they reach a therapeutic range, but you are not symptomatic so you have a head start there.

I have been on 6MP for 12+ years. It has been one of the main drugs that has kept my disease at bay for so long. I have very little active disease and have been able to avoid all side effects except for high liver function tests. My liver levels have always come back high, then the next test they will be back down to normal range. It just seems to be the way I function. I have had a liver biopsy and all is fine, its just a fluke of the way I process the medication.

Most of the information out there about 6MP is concerning dosages exceeding those taken by Crohn's patients. Are there side effects, yes, are you likely to get then, probably not. If you read the side effects of Tylenol you would probably never take that again either. Everything has a risk. All we can do is get our blood work done and make sure that we are monitored by our doctor.
Posted 3/2/2011 2:09 PM (GMT 0)
We have many members who have been successfully maintained for over 10 years with 6mp, Zanne above being one of them. It is important that you take some type of medication for your Crohns at all times. Even though feeling well, Crohns can still be in there doing damage on a microscopic level without you even knowing it. Believe me I learned that lesson the hard way. Hope the 6mp turns out to be a good med for you. Hugs!
Posted 3/2/2011 2:48 PM (GMT 0)
When I first started 6MP, it made me very sleepy for about the first month until I think my body started tolerating it more. Id suggest to maybe take it before you go to bed as opposed to in the morning if the same thing happens to you.
Posted 3/2/2011 4:16 PM (GMT 0)
THANK YOU ALL FOR THE WISE INPUT

Erwin
Posted 3/2/2011 8:58 PM (GMT 0)
Erwin, I am scared too, I am about to take 6MP and I am already on Humira and Lialda . . . I don't know what to expect!
Posted 3/3/2011 4:07 AM (GMT 0)
Why am I struggling with the decision to take medication? I learned here that every case is different, I also read all there is about the medications and it is not clear to me what is more harmful, the medications or the illness. And this is specially true in my case since I have absolutely no symptoms. It is true that there is immflamation and I have no doubt that I am suffering from CD, but my blood tests are almost normal. So why can I not watch out my diet? which by the way it has always been benign. I would stop milk products, no hot (spiced) foods, no sugar, minimize fried foods, etc. In essence make it easy for my intestines to operate. And take some natural anti inflammation substances like omega 3, curcumin, etc. Then I can monitor my blood tests, and my body and if things deteriorate, jump to medication!
I know at least one person that does exactly that and I have read of others in this forum that also are not taking medications.

Erwin
Posted 3/3/2011 7:59 PM (GMT 0)
I'm confused..  Why are they starting you on the big guns first??  In my experience and from what I have heard they try going from the drugs with the least side effects and work up.. I started on Asacol, then switched to Pentasa was on that for years it stopped working for me or my Crohns got worse and now I am on Imuran. I was scared to death to go on the Imuran because of all the possible side effects.. Been on it for about 4 months so far so good..  They said if it didnt seem to work for me then we would talk more about the other drugs like the one you are speaking of.  Just a thought.... I dont know your history or what they saw on your test..  Good luck
Posted 3/3/2011 8:04 PM (GMT 0)
You know JLCat might be on to something. I have had this darn disease for almost 36 years and other than a brief stint on 6mp I have always been maintained with one of the 5asa meds such as Pentasa or Asacol. These are very mild drugs and might be something better to start with than the 6mp. Some docs don't like these meds, as they say they don't work. But they have worked well for me all these years and there are quite a few others on the forum that have had success with them too. I have a co worker who is like you (no symptoms) and he is maintained with only Pentasa. Hope that helps some. Hugs!
Posted 3/3/2011 8:53 PM (GMT 0)
JLCat/Nanners,
The medications that you refer are not good for me because I have borderline problems with my kidneys and the doctors do not to aggregate the situation.
But even with that, I am slowly coming to the conclusion that in my situation, as one with very mild CD, I.e., no symptoms and very decent blood test results, 6MP is just too risky for the rewards. One of the three doctors that I have consulted as suggested that I take steroids for a few months, watch my diet, take high levels of omega 3, etc (basically Weil's recommendations). Then see how the illness develops: do blood tests very routinely and conduct a colonoscopy in one year. Should things deteriorate, then I can think of begining heavy medication.
What do you guys think about this approach?
Posted 3/3/2011 9:44 PM (GMT 0)
Well Erwin I will tell you honestly not treating this disease can be a very bad thing. And what I mean by not treating it is not using Crohns meds. I once enjoyed a nearly 20 year remission, but because I chose not to continue using my meds, I had inflammation occuring without me even knowing it and as this repeated inflammation occurred and then healed, it created more scar tissue each time until I eventually became totally obstructed and had to have emergency surgery. So I am now a big proponent of maintenance meds. And I try to share that with everyone so that they do not have to go thru the trauma I did. But you have to do what you think is best for you, but I do want you to be aware of what can happen. Good luck!
Posted 3/4/2011 3:52 AM (GMT 0)
Nanners,
I do not understand. I would have assumed that an increase in inflammation would have resulted in some indication in your blood tests (increase in CRP and/or ESR) and/or colonoscopies. Was that not the case?
Posted 3/4/2011 2:31 PM (GMT 0)
Nope! My blood tests are always normal, even when I am sick as a dog. Some of us have no changes in our bloods for some strange reason. I tried to ignore my Crohns. I lived my life like I didn't have the disease. The damage occurs on a microscopic level without you even knowing it. So now I always treat it, even when feeling good.
Posted 3/4/2011 2:39 PM (GMT 0)
Nanners,
WOW! that is shocking.
What about colonoscopy and capsula endoscopy, both of which I have had and showed inflammation damage?
Erwin
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