Still undecided on Imuran

[Paislee]

So I have been told by my GI that Imuran is the best treatment for me right now to try and get a flare under control. This was a month ago, I am absolutely terrified of this drug. I can't get up the courage to give it a try so in the mean time I'm living with the pain and symptoms of Crohns. I'm so torn on this. I have just started my career in health care as well and do not want to have to take any time off where I am new. Also I have had problems in the past where people, managers and co-workers just don't take me seriously as they cannot physically see the disease, so I can't be sick right...we've all been there no doubt. I don't want anyone thinking that i do not want to work, I love my job. I have also been thinking a lot about the effect Imuran would have on a pregnancy as I was hoping to be pregnant before the year is out. Who knew that this would be such a hard decision, any advice would be appreciated.

 

[heisenberg]

unfortunately if you want to get the crohn's under control then Azathioprine is the first port of call, because other less potent drugs simply aren't effective at all in getting people into remission. I know it isn't a nice drug but the fact is that having repeated flares which require steroid treatment or even surgery is a far worse alternative.

So from a purely crohn's point of view I would say definitely consider taking it, as the benefits far outweigh the downsides.

The pregnancy thing makes things a bit more difficult, but unfortunately I think it is going to make things more difficult whether you decide to take Aza or not. All crohn's meds could have a possible effect on an unborn baby, but like the majority of other drugs, there have never been any trials done on pregnant woman. So there could be a possible, small, chance of doing damage to your baby, so you will have to weigh up whether you want to take this risk or not. However I would say that going drug free isn't really an option either - if you have a flare up during pregnancy and need steroid treatment, then those have a chance of doing damage as well. If you went without treatment then you could risk doing yourself some huge damage. Plus getting severely ill during pregnancy can have an effect on the baby as well. I guess you are sort of damned whatever you do as this is part of the problem of having a recurring disease.

 

[Hobbes650]

Ditto. Seems like the normal course of action, and Imuran is the first step up. Crohn's can be a stubborn sob, so staying ahead of it is the goal. There are other steps after Imuran that can be used if not responding- not that it makes it any easier now, but not taking it is woulbe like fighting with one hand tied behind your back.

 

[SarahD]

Hi Paislee,

I'm currently in a similar situation, Pentasa is no longer effective enough for me and the next step is Imuran, which really scares me too. I agree with heisenberg that the risk during pregnancy would probably be higher if you're unmedicated and have a serious flare than the risks associated with taking Imuran if it's keeping you in remission. That being said, personally I don't like the thought of being on Imuran whilst pregnant. Those at highest risk are people who take Imuran after an organ transplant as they're on a much higher dosage than is used in IBD. I'm not sure what the risk is for people with IBD, but I think the general concensus is that it's best to have your disease under control.

So far I've managed to avoid going on Imuran by following an elemental and LOFFLEX diet since Februrary this year, so maybe that's an alternative you could look into? There's a lot of information in the Enteral Nutrition thread. It's been a really tough 4-5 months for me with ups and downs but I've seen a huge improvement in my symptoms. I won't say I'm in full remission because I'm not, but I feel a million times better than I did and I can function normally again. At the end of the day you can't leave an illness like Crohns uncontrolled because it can cause so much damage.

 

[KWalker]

unfortunately if you want to get the crohn's under control then Azathioprine is the first port of call, because other less potent drugs simply aren't effective at all in getting people into remission. I know it isn't a nice drug but the fact is that having repeated flares which require steroid treatment or even surgery is a far worse alternative.

So from a purely crohn's point of view I would say definitely consider taking it, as the benefits far outweigh the downsides.

The pregnancy thing makes things a bit more difficult, but unfortunately I think it is going to make things more difficult whether you decide to take Aza or not. All crohn's meds could have a possible effect on an unborn baby, but like the majority of other drugs, there have never been any trials done on pregnant woman. So there could be a possible, small, chance of doing damage to your baby, so you will have to weigh up whether you want to take this risk or not. However I would say that going drug free isn't really an option either - if you have a flare up during pregnancy and need steroid treatment, then those have a chance of doing damage as well. If you went without treatment then you could risk doing yourself some huge damage. Plus getting severely ill during pregnancy can have an effect on the baby as well. I guess you are sort of damned whatever you do as this is part of the problem of having a recurring disease.

I'm going to have to disagree with you. I have active crohns and I'm managing quite well without meds. I've been off meds for 2 years now without any problems. I think with Imuran it is deciding if its right for you only. My doctor wanted me to try it because the meds listed in my signature lost effect. I turned it down because for me the cons did outweigh the pros. I show very few physical signs of crohns so to me I didn't feel like I could really benefit from taking a drug like imuran. However with that being said, my opinion would definately change if my crohns was bothering me a lot more than it is. Some people say it can be a very effective drug so I think each individual should think about how bad their crohns is and decide whether or not imuran is the right drug before trying something. There are much safer drugs, but there are also a lot more risky drugs. Best of luck!

 

[Gra]

I'm on my third week of Imuran, had serious misgivings (and still do!) but so far I seem to be noting that it is helping at least by making my bowel movements more consistent and more "normal".

That's the problem with this disease, you're damned if you do and damned if you don't...

Gra

 

[Gra]

Kwalker, you say you've been been off meds for 2 years now without any problems. How do you do it? Just with diet? I have wondered many times whether I should try just diet adjustment prior to going onto harsher treatments.

Gra

 

[KWalker]

Without stealing the thread, yes I just manage with diet... Although I don't follow a diet. I just eat healthy. I still eat fast food, ice cream, chips, chocolate, etc but when I'm eating important meals its almost always healthy, and it works for me because I like those foods. Chicken, fish, vegetables,etc. The ONLY physical symptom I have is diarrhea and I can take psyllium and even that goes away. I only go around 4 times a day but when I do its just not formed. Who cares, less work for me lol.

I figured I could not take meds and have crohns, or I could take meds and still have crohns. Maybe if I knew meds could cure me and make crohns go away then my opinion would change but with where I'm at now I just don't need them. Sure I could end up needing surgery down the road, but there's a ton of people taking meds and still requiring surgery so I've got a one up there.

I have a few days during the year (usually in the winter) where I feel "off" but I take some rest, it goes away and I continue doing what I do. Having experience with drugs like remicade, humira and prednisone I just don't need to go through that again right now. Mind you, if I felt my crohns was serious my opinion would probably change. Feel free to pm me if you want to talk. A lot of people on here think its silly to take meds so I'm sure there's a few people hesitant to talk about it.

 

[skippy111]

If you decide to take the Imuran, you might want to have a look at the possible interactions it has,

Asacol, Pentasa,

http://www.drugs.com/drug-interactions/azathioprine,imuran.html

I think that it is great that you are able to manage your chron's without meds.
I was managing mine for a while too without meds, then had a relapse in april, some things are beyond our control I guess,

 

[Jennifer]

Check this out skippy111: http://www.drugs.com/drug-interactions/imuran-with-prednisone-296-139-1936-0.html Same site. Prednisone is all over the map really. I think its more of an issue of making sure your doctor is aware that you're taking it.

You can take them together.

 

[skippy111]

My appologies, It listed the prednizone as one of the common drugs that were checked together with imuran ... I edited my previous post accordingly, thanks for bringing that to my attention CrabCake :ytongue:

 

[ErikaHouston]

Imuran has been a lifesaver for me. I consulted with the best of the best for my case (Harvard, Baylor and also MD Anderson) all agreed Imuran was my best treatment option. Aside from taking pills each day, I forget i even have this disease. Good luck with your choice!

 

[VapeKing]

The thing about crohns is is this. Every single case is different and ever single person is different. Ive had this thing since I was 9 years old back in the early 70s....way back when they used rigid lights for examinations (I wont go in to the horrors of that). Since Ive had it so long I consider myself somewhat of an expert at least from my perspective. Hell I bet I could dang near perform a colonoscopy myself Ive had so many of them. IMHO diet and well-being are ultra important in managing the disease. When I say diet I cannot say what type of diet. You have to know what types of foods bring on your particular type of problems...it can and will take years to know what you can and cannot tolerate. Gluten free diets may work for some and not for others...this is why you must understand what brings your own disease on. A sense of well being is big time important. I fully believe that a great majority of persons with this disease have some type of nervous disorders whether they will admit it or not. I believe our own brains can cause our bodies to attack themselves. I personally am not med free and I take Asacol but it does not work that well sometimes. If I flare I usually will go in to a fasting mode eating mainly mild soups and such until it comes under control. Some say this will not help because we are talking about inflamation but in my view you make the inflamation worse when you feed the flame....give those intestines some rest. Early in my disease history I had massive bleeding and flare after flare. Transfusions ect ect ect. They even talked about removing portions of my colon and of course the dreaded bag. I refused all of that. As time went on I became more comfortable in my own skin and I noticed that the flares stopped coming so regular and bleeding completely stopped. Getting my nervous condition under control as well as watching the foods I ate helped better than any drug I have ever taken. I recently had another colonoscopy and they found a small are of inflamation and the doctor immediately started talking to me about Imuran and Remicade. I told him how I usually manage my disease and he just kept hammering home how I need to be on one of these 2 drugs. As a former pharma rep I understand doctors and I understand the companies that sell them these drugs. I really threw some red flags up as to how hard he was pushing me to get on these newer drugs. After reviewing the risk involved with these meds I was like not no but hell no. The risk was far too great especially knowing that there are safer alternatives at least in my own experience. Now im not telling anyone not to take a drug that a doc prescribes. When your hurting and in full relapse you need help and that usually means meds. But once your in to remission think about some of the things im talking about. I personally just do not think it is necessary for a person to be on these high powered meds when in remission but the doctors advocate staying on them. Anything that alters your own immune system is not a good thing. Of course this is simply my opinion.

 

[Bec215]

I see a lot of fear about Imuran on this thread, so let me share a story that may help put some minds at ease...

I'm 39. I was diagnosed with Crohn's in 1982 at 9 years old, and UC diagnosed in 2007.
I've had 2 bowel re-sections, mostly small intestine plus a little of the large, due to strictures that nearly closed off my bowels.

I was totally freaked out when my gastro recommended switching me from Asacol to Imuran in 2007 - she told me it would 'double' my risk of getting cancer. But then I asked a critical question: "What is the ABSOLUTE risk of getting cancer, that is doubled?"

The answer: 1% --> 2%.

So, in other words, your risk of being suceptible to cancer doubles from 1% to 2% by starting this drug. In my mind, that is WAY different from going from 20% to 40%, for example.

It's really important to ask the doctor what the ABSOLUTE percentages are, because they are taught to think in 'statistically significant' terms - but often what is statistically significant to a doctor or scientist is not to the average person.

Considering I'd had two surgeries, and knowing Crohn's is infamous for being 80%+ guarantee to return after surgery, I made the decision to take Imuran.

At 100-125mg, I have had no side effects whatsoever for five years. Boosted to 150mg four months ago due to a severe flare, and after three months I have noticed more hair coming out, but nothing that is in danger of making me bald. This dosage is temporary while I'm having a flare.

Regular blood tests have been normal - and the blood tests are important for your doctor to ensure that your risk is kept as low as possible.

Keep in mind, transplant patients take 3-4x the dosage of a Crohn's/UC patient! The risks for them are much higher than for us - so you also have to be cautious that you don't confuse the risk profiles for transplant patients with our dosage levels.

As the other poster mentioned, stress and general health are the two biggest factors in keeping your disease under control - BUT you also have to calculate your situation in real terms... on Imuran for five years, I have not had any build up of scar tissue that creates the strictures that lead to surgery. That is HUGE for me... it is the first time in 30 years that I don't have a narrowing of my intestines.

It means that I can keep working at my high-stress job and traveling on vacation with very little fear of hospitalization for the first time in my life. All of that for me make it 100% worth it.

How compromised is your ability to enjoy life?
That, and the absolute risk, should be balanced in making your decision.

Good luck!

 

[nitty]

Thanks Bec215,

I'm in the same position as the OP, and have been putting it off, but after a terrible night last night and general deterioration I'm going for the Imuran. I need to get this sorted and under control first and foremost, and then, if I make it to remission, I can consider other options. Maybe by then there could even be newer, better treatments available. But if I carry on as I am I'm going to have no ar*e left anyway!

I'm a reluctant candidate, but I realise the consequences of not giving it a shot could mean allowing my body to quietly rot from the inside. That may sound like an over-exaggeration, but in my nursing past I cared regularly for a patient who literally had NO abdominal wall left at all, and eventually died from this horrible disease.

I cannot consider the possibility of a future of saying "if only I'd got it sorted sooner". I know nothing's guaranteed but I have to be pro-active about it.

 

[nitty]

Paislee,

Please also consider how much time would you possibly have to take off work for blood tests versus how long you could have to take off sick, or the prospect of strugglng at work if you flare.

 

[SkinnyNinny]

I figured I could not take meds and have crohns, or I could take meds and still have crohns. Maybe if I knew meds could cure me and make crohns go away then my opinion would change but with where I'm at now I just don't need them. Sure I could end up needing surgery down the road, but there's a ton of people taking meds and still requiring surgery so I've got a one up there.

I am in the same mental space. I am feeling much better since I had resection surgery in December. The doctor I think feels he needs to prescribe maintenance dosage, and is suggesting Humira and Imuran. I filled the prescription for Imuran but am holding off taking it. I took it once and am now remembering what that was like - light sensitivity, generally feeling crappy etc. Since I'm feeling great now, what good would it do? How do I know it's working in a positive way?

I'm with you - when I feel bad I will rest. When I'm good I can forget about it for a while. I value my quality of life and even though I want to follow medical advice I am really skeptical about 'maintenance' where there are so many side effects.

 

[bettyboop12]

It scares me to think what damage this crohns is doing to me on the inside. During a flare, my insides must be suffering so much due to the inflamation.

I can only help it as much as I can and for me, taking aza is the next step. I been on it for 6 months now and the way I see it, by taking the aza and eating right 85 percent of the time is the best way to help my body heal in preparation to hopefully having a baby this year.

I can put up with having a cold or feeling a bit iffy on days just so long as my body is healing. I am sure that my body would have been worse by now, even possibility of surgery and that is something I certainly don't want.

I'm not totally free of Inflammation and still fighting it off but hoping that the longer I go without a flare the better. Reading about all the side affects before starting is scary and seemed like a big decision but now, for me, it's not so scary anymore.

 

[hawkeye]

I've been on it since 1991 at various dosages. I credit it to keeping me in remission from the early 1990's until about 2009/10ish.