Imuran?

[Mommy of 2]

I was diagnosed with CD in sept 2010 after multiple trips to ghe ER due to stomach pain. After being admitted for 2 weeks and released I Went on prednasone for 3 months or so and slowly tapered off. All seemed great! I got pregnant with my 3rd baby shortly thereafter and had an amazing pregnancy. My baby is now 7 months old and I've just had my 2nd bad flare up. Was in the hospital for 8 days and now on 50mg of prednasone. And all seems great again. The pain scale is about a 1-3. BM's are normal(ish).
I saw the GI today for a follow up and he wants to put me on imuran. Now obviously I did some research as soon as I got home and there seems to be A LOT of side effects! And it also seems like its for severe cases. Am I a severe case?? I just don't know if I should be taking it. I know he's the dr and clearly knows more then me, but I'm very concerned about being on something so powerful, for such a long period of time.
So I guess my question is... How is imuran for you? Side effects? Recommend it? Do I need it??? Thanks everyone

 

[Rebecca85]

I went on azathioprine (generic imuran) because after a pred taper and adding Pentasa, I was still getting mild pain most days. I figured any kind of regular pain meant there was a risk of chronic inflammation causing scarring. I have been on it for 18 months now. At first I had side effects like feeling sick, and catching bugs easily, but that only lasted a couple of months. Since then, I have been able to eat almost a normal diet and no bathroom troubles.

I'm not going to recommend whether to take it or not, or tell you whether you need it, because I'm not a doctor!

 

[Mommy of 2]

I'm glad it's working for you! Ive just been so back and forth. I seem to see more negitive stories then success stories :shifty-t: I actually called my GI today and told him I'm not going to take it. Soooo, I guess we shall see what happens when the ween of prednasone is done. Wish me luck!

 

[Grumbletum]

I was put on it cos a combination of Pred and Mesalazine was not dealing with chronic inflammation ( and a couple of complications. ) Been on it for 9 months now.
I had the headaches and nausea at first too, but I haven't been prone to catching bugs etc.
I'm not a doctor either, but you're on quite a hefty dose of Pred so inflammation must be significant. Most people are prescribed a maintenance med for after Pred but there are milder ones than Imuran.

 

[Since13]

I was just prescribed Imuran this week. reading up on it scares the crap out of me, but I think if you read anything on whats meds can do, you'd feel the same way. Chances are nothing major will happen. Its all in the mindset.

 

[KWalker]

I don't know if I should say this or not but a doctor actually tried putting me on it once and I refused it because of the risks. To me it wasn't worth it, but everyone is different.

 

[CLynn]

It actually worked faster and better for me than Prednisone ever did.

 

[Mary:)]

I was on Imuran and it worked for awhile until I developed a fistula and then had to take Humira...which in my opinion has worse side affects than Imuran.

 

[Mommy of 2]

Thanks for all the input everyone!

 

[David]

It's understandable that you're concerned about taking Imuran. You asked if you're a "severe case". I think it would be a good idea to open that dialogue with your doctor. Find out if you are and if he or she feels that it's important to get you on some of the more powerful drugs. In addition, there are tests such as the TPMT levels and genetics that can be taken before your first dose of Imuran that can help (it's not foolproof) determine proper dosing and whether or not you're at greater risk for some types of side effects.

If you're steadfast in your determination not to take Imuran, that's fine. But what are you going to do instead?

 

[CRAZYLEGS]

Be very carefull if you start taking Imuran! I was prescribed it and it almost did me in. Make sure that you have your blood tested frequently because in my case the Imuran stopped my bone marrow from producing blood. I felt myself getting weaker and more tired by the day . I went to my family pysician and he ordered a chest x-ray and blood tests. As soon as the results of the blood tests came back, I was rushed to the Emergency Ward and was in that ward for 2 days while they put 6 units of blood and 1 unit of platlets into me! I had to stay in the hospital for 10 days untill my blood levels had made enough of a recovery and I could be sent home. I'm not saying that this will happen to everyone, and I'm sure that in most cases the drug is wonderful, but just make sure to have your blood tested often after you begin your treatment. Wishing you all the best of luck and a speedy recovery, from, Crazylegs

 

[Since13]

Have to admit coming here is not making me feel much better. my doctor always told me to stay away from the internet as you'll hear horror stories that will make you not take anything.

From what I have been told, most people have NO side effects when taking entocort or imuran. So I'll just keep telling myself that while I am on it.

 

[stacichristine]

Since13, It is a bit scary but as long as you get all the proper blood tests and have an open dialogue with your GI, you have to do what is best for you. I am getting ready to start imuran too, and am a bit worried, but I won't know what is going to work for me until I give it a try. I HAVE to find something!!

 

[Rebecca85]

To echo what crazylegs said, when you start Imuran or azathioprine, it is recommended to get blood tests done every week for the first month at least. This will help to spot if you are going to have serious side effects such as suppression of bone marrow. The patient information leaflet will also let you know which side effects are 'harmless' and which require that you see a doctor immediately. I recommend that you don't read the list before as you'll just scare yourself again, but if you do experience a side effect, look it up on the list.

For what it's worth, when they do drug studies, some side effects like nausea, vomiting, headaches, tiredness, are commonly reported by all people in the trial- even the ones on placebo (sugar pill)! And they have to report all side effects experienced, even though it may be a coincidence or the person has other medical problems that could have contributed to the side effect. So the 'real' risk of side effects is lower than it seems from reading the information leaflet.

 

[DustyKat]

Both of my children are on Imuran and have had no issues with side effects. They are both in remission, surgically induced, and are living life to the full.

They continue to have their bloods regularly monitored.

Dusty.

 

[Twiggy930]

My son has been on Imuran for 2 months and has not had any side effects. Keeping my fingers crossed that it will lead to remission, we were told it will take at least 3 months for it to be effective.

 

[cosmic dave]

I've just finished with aza, it worked well apart from not being able to go out in the sun ! If I want the outdoor type I would have no problems with it.

 

[Mommy of 2]

Well... I guess I'm just hoping to be one of the small few that don't have to be on medication for the rest of their lives and live with the few minor flare ups that can be treated with a fluid diet for a day or so. Thats what's worked for me so far (minus the 2 times I was hospitalized) I dunno... I can be hopeful right? Obviously if this doesn't work then I guess I'll have to take something.
Thanks so much for all the help everyone