Almost 4 years of Imuran...

[CrohnsDaddy]

I'll try to keep the back story short

Diagnosed with mild Crohns in Sept of '07. Pred immediately helped. Humira didn't help at all, and neither did Cimzia. Entocort? Nada. Started azathioprine in June 09. By October, I was completely off the pred (thank God. I hate that stuff).

I have maintained remission since that time with 100-150mg azathioprine, 2x500mg Pentasa, a glass of Metamucil, and 1 S. Boulardi (a type of yeast). I would have the occasional flare, but overall, my symptoms were drastically better.

Until recently, at least.

Over the last several months, I have started flaring much more frequently. These flares, however, have been *very* different from what I've experienced in the past. Previously, a flare's predominant symptom was cramps. Lot's of 'em. The kind where you hope you make it to the porcelain. The difference is that now I have much less cramping (occasionally none at all), but still get the "gotta go... right now" feeling. This mostly cramp-less "gotta go now" alternates with days of constipation.

I'm at the max azathioprine dosage I can handle, so adding more isn't a consideration.

Have many of you had success with azathioprine, only to have it fail you at a later time?

I was under the impression that as long as it worked initially for you (and your blood work stayed ok) that it would pretty much always work, and the only reason to ever stop taking it was for bad blood work or side effects that couldn't be tolerated.

I'm kinda surprised to find myself in this situation, really.

 

[D Bergy]

I have not heard of any treatment that cannot stop working, and there may be various reasons for that but resistance to the drug that can develope over time is probably a factor.

I am also taking Imuran now and anticipate a time where it will likely stop working. If it is working now, I really don't know. What I am doing besides using Imuran to hopefully prevent problems down the road is treat what I feel are the causes of Crohn's at the same time. One thing I am focusing on at this time is fungus such as yeast. I am taking Oil of Oregano just because I had some and it is an antifungal. I am going to switch to Olive Leaf extract once the Oil of Oregano is gone, just because one member here has had good results using it. I am also reducing my sugar intake the best I can.

It is a crap shoot as there are not any studies that indicate that this will work, but the properties indicate it could work. In any case, it is not likely to do any harm either.

I use other more experimental treatments also, but they are beyond the scope of anything most people are going to use.

This is a rather off the wall treatment, but if it were me I would try a clay product to regulate the intestines somewhat. I have a product called Redmonds Clay that a few people with Crohn's have used to improve symptoms. I am not taking it now because I am using Cholestyramine, which has a similar effect. The clay product is not consitipating which is why I personally would use it if constipation was an issue.

It is not a mainstream treatment, and I will not go into the details as to why it helps, but it has certain properties that may helps remove some pathogens and it is unlikely to do any harm. All the evidence for effectiveness is anecdotal, so take it for what it is worth.

If you run out of options, it may be something to consider.

Maybe you are just going through a bad spell and the problems are not related to the Imuran working or not. How long has this been going on?

Dan

 

[hawkeye]

I am on Imuran and have had flares. My flare symptoms tend to be the opposite of yours - more on the constipation side. The typical approach from my gastro is to go on a course of pred 40mg and taper down.

 

[CrohnsDaddy]

I am on Imuran and have had flares. My flare symptoms tend to be the opposite of yours - more on the constipation side. The typical approach from my gastro is to go on a course of pred 40mg and taper down.

Yeah, my GI preferes the pred-and-taper response to flares as well, but unfortunately that's no longer an option for me. Prednisone gives me "steroid induced occular hypertension" (think Glacoma) to the point that eye drops can't control it.

This really sucks, as prednisone was always my go-to for relief; it always worked and worked fast.

Going to call my GI this morning and ask for a cipro/flagyll course to try and get some relief.

And yes, I agree with the constipation-predominant flare symptoms... I get hugely bloated to the point that I feel like I'm going to explode. Then I get frequent "gotta go right now" symptoms that are mostly crampless for several days, followed by several days of no BM's at all. The problem is, I have no idea what any particular day is going to be as far as symptoms go. It could be a "no bm's at all" day, or a "you're going to go 10 times today" day, with no hint as to which it's going to be. But the one constant is the bloating. Even on days where I go ten times, I still feel pretty bloated at the end of the day.

After experiencing "mild Crohns" for over 20 years, those with "moderate" or "severe" have my true sympathy; even the "mild" form of Crohns is enough to make your life hell.

Overall, I'm still better off than I was before the azathioprine, I just became very spoiled by living the better part of 4 years in a mostly-remission state.

 

[hayley00uk]

I Have been living with crohns since 2008 & have been on azathioprine for about 3-4 years after being on pred for a year ,they put me on aza 150mg it seems to keep me stable no more pain but the occasional flare up. Ive been told that its not a good idea to be on aza for long time has anyone experienced problems with long term meds?

 

[hawkeye]

I Have been living with crohns since 2008 & have been on azathioprine for about 3-4 years after being on pred for a year ,they put me on aza 150mg it seems to keep me stable no more pain but the occasional flare up. Ive been told that its not a good idea to be on aza for long time has anyone experienced problems with long term meds?

No issues here with being on it long term. I go for blood work every 2 months

 

[kh216]

If your symptoms are mild, perhaps you might like to try taking an over the counter probiotic such as Align or Flourister, in addition to your Crohn's symptoms. However, if you experience a lot of pain, blood in your stool or fever, call your gastro doctor right away. If you don't see any improvement after taking the probiotic a few days, call your GI doctor.

 

[randy.stand]

I was diagnosed with crohns in 2004 and was put on Imuran along with Pentasa as my first drugs really and they both worked. I'd been in remission right up until March of last year (2012) when I suddenly showed signs of flaring. In about 2008 I was taken off Pentasa. My doctor said it rarely works in Crohns and didn't see the point in me continuing on it. So I had first a 9 week Pred course to settle things down.... As soon as I got to 5-10mg symptoms returned. After 2 weeks without Pred I was out back on for another 6 weeks which eventually only turned to 4 when I saw my doctor. They gave me really bad acne on my face, back and shoulders. I used Erythromycin for that but they also re introduced Pentasa. And since that I've been back in remission for 7 months. My doctor finds it strange because it seems the Pentasa has to be alongside the Imuran for my Crohns symptoms to stay at bay despite Pentasa not being a great drug for most with Crohns.

I initially thought the Aza wasn't working anymore and was prepared to move onto others such as Humira etc but never needed in the end. Fingers crossed it all gets sorted for you.