Newly Diagnosed: Purinethol?

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Sep 17, 2013
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Hey,

Im a newly diagnosed Crohn's and the doctor gave me Purinethol. Im concerned about the side effects and the fact that my doctor told me I would have to take it for the rest of my life. Im a 27yo female.

My doctor also told me that if I dont take it that it would mean my Crohn's would get worse.

My doctor also told me that there is no specific diet to follow.

Is this advice from my doctor well founded?

I have read online that an immunosuppressant is used in more developed Crohn's and only after trying other things to get a remission?

Should I get a second opinion from another doctor or are these just realities I need to deal with?
 
Sorry no one answered your message prior to now. It happens that they don't show up on the first page so they go missing. Thanks for that support bot application.

The purinethol is a common "entry" medication regarding crohn treatment. There are different type of illness management referred as top-bottom, bottom-up. There is a posthttp://www.crohnsforum.com/showthread.php?t=54486

Some school prefers to progressively treat it: first step being salicylate(ASA) medication, but these, in CD, are really not showing as the most effective at keeping remission and treating the disease.

There are complication in crohn that do not occur in ulcerative colitis. To start with ASA treatments is more pertaining with a UC diagnostic than with CD. This is my opinion and I am no doctor, but the ASA does not have the capacity to prevent, let say, the formation of fistula which can be a manifestation of crohn disease but is not present in UC.

Sorry if this sounds complicate. The point is that, after ASA, well there is prednisone that stands as a entry line treatment but it is only a good idea to help inducing remission and it is really controversial if it is really that great of an idea to give that at the beginning of treatment. It needs to be taken for short term and use for its great ability to reduce the inflammation. Steroids are not to be taken long term, so do not qualify well to be used as a maintenance medication to prevent the onset of symptoms.

That leaves you to the next step, immunosuppressant, which are purinethol (6-MP), azathioprine (AZA), and less frequently, methotrexate (MTX). Purinethol is generally the first medication they will try to introduce to maintain remission. There are a lot of people who takes it daily and takes it as a long term medication for many years as long as it proves itself effective. It can maintain remission during years for certain. So it is not a wrong thing to do from your GI.

The difference you can encounter is that certain will prefer to hit hard with the biologics (which are somewhat like the "cadillac" medication) to prevent the disease from evolving at all. From my perspective, it is a good idea to want to prevent the evolution but the biologics, yes they can work incredibly well, but, it is not rare to build up antibodies to these drugs which makes them become less effective. Some won't build antibodies and can take these drugs and achieve remission for years while on them, while other will encounter a loss of efficiency of the molecule after a few months to a few years. Where I live they are mostly used when the disease is pretty agressive.

As far as diet goes, most GI I've seen as told me there was no specific diet when you are not flaring. Most have told me, get on a low residue diet when you flare. They will generally tell you to be cautious with dairy and such. My GI has that opinion that if you stress yourself with the "correctness" of your food all the time, its probable that it generates more stress than good... Well this is an opinion like any other but from my researches and personal experience, avoiding dairy, gluten, processed-food, limit red meat, is about the best you can do diet-wise regarding crohn. SCD and paleo are, in my opinion, worthy of a try even though they are kinda hard to switch to.

Sorry if this makes a lot of informations all at once, I hope this helps a bit!
 
I was diagnosed in June on my first flare and the first drug they gave me was asacol hd, the second was pentasa, both of which failed miserably and actually made me feel worse. Next my doc gave me entocort which is a steroid but its a specialized steroid that comes without many of the side effects of the old style prednisolone. My doc now wants me to come off the Entocort and start 6-mp which I believe is nearly the same as or at least in the same class of drugs as purethinol and I have decided that I'm not taking it, at least not yet. Research your options and talk to your doc. If he is stubborn about your research or your hesitation to start these drugs then hes not a good doc as I see it and I would look for another opinion. Bottom line is, no matter what, its up to you what you put into your body. As far as diet goes, I feel like its different for everybody but I'm having no gluten, no casein/lactose, no red meat, no alcohol, and no caffeine. At the moment, I'm preparing to attempt to wean off of Entocort so I'm on a mostly liquid diet. I make shakes/smoothies with fresh fruits and veggies and I use a raw vegetable protein with it. I have 1 solid meal a day as an early dinner and all that seems to be working for me. Also probiotics and medical marijuana help me...
 
For most people with Crohn's reality is that they need immune suppressing or modifying drugs to keep their disease under control. The disease doesn't go away because you get symptom control. So yes you are likely to need to take some kind of medication for life.

Now there's research going on all the time and it may be that something new will come along in your lifetime that changes that.

But for now, most CDers must rely on meds to treat flares and to keep them in remission.

Since you didn't require prednisone (or so I assume since you didn't mention it) your case may be mild-moderate at this point. So the doctor has started you on 6-MP which will help control one part of your immune system that is over-stimulated and causing some of the damage in your intestines. It takes up to 4 months to be effective.

Many people have been on 6-MP with no problem for decades and, when taken as directed, it is a very safe medication. My 10 year old son used it for 2 years with no problems at all.

Diet is something that is hotly debated among CDers. Most GI's in the US don't seem to feel dietary changes, with the exception of using liquid diets, are important.

On the other hand many CDers feel that diet is important to some degree and through trial and error have found that some foods make them feel worse. So they avoid those foods.

Some CDers follow very strict diets like the SCD diet and feel this is an essential part of their treatment, sometimes to the exclusion of taking medications.
 
what we put into our body affects it greatly i feel. i research ingredients in food and found lots of things to be harmful. food has everything to do with our bodies starting with our mouth. if we eat lots of sugar dont brush property what happens? then if we use listerene it kills good bacteria as well as the bad. same with our intestines. im not totally against meds as they have saved my life quite a few times but they have damaged me as well. im allergic to over 15 meds and over half being crohns meds. i find it neglectful that docs areant taught or dont correlate the 2. it not all of it but part of it. this is just my opinion. medical mj is a life saver and quality of life improved greatly. everyone is different. good luck.
 
For most people with Crohn's reality is that they need immune suppressing or modifying drugs to keep their disease under control. The disease doesn't go away because you get symptom control. So yes you are likely to need to take some kind of medication for life.
I think that a lot of ppl that think they have to use drugs or are told by their doc that they will have to stay on drugs end up being on these meds forever because taking the meds is easier than being on a balanced nutrient rich liquid diet and figuring out what foods ur body tolerates. I think immunosuppressive drugs are dangerous and I'm done throwing man made chemicals into my body to try and feel better when I'm pretty sure it's man made chemicals that caused me to have the crohn's to begin with. I think the first line of treatment for crohn's after the first flare is controlled should be very high doses of probiotics, an all natural organic raw liquid diet free of allergens and preservatives, and medical marijuana in combination.
 

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