About to start taking Imuran... Would like some imput!

[chefcutiepie]

So i went to see my GI today, and he told me that the prednisone didnt work for me and I know have to move on to Imuran. Im alittle nervous about it as some of the side effects are serious... I would love and appreciate any information at all .. thanks in advance

Megan

 

[Cookie]

Hi Megan,

I know taking a drug like this can be a little scary, but keep in mind that the drug companies tend to go overboard on stressing side effects to appease the regulators and the lawyers. That said, some people do react adversely, but your doctor will monitor your blood to see if anything potentially harmful is going on. I got my bloods done every two weeks at first, then down to once a month, then 6 weeks, then 8. As long as you keep up with the blood work and keep in touch with your doc, you should be fine.

Several bits of advice I have learned from taking Imuran:

1. Your dosage usually depends on you weight, so the more you weigh, the more you can tolerate. I am around 125 lbs and was not able to take the 150mg dosage due to severe nausea, so I went back down to 100mg.

2. According to my doc, it's best to start off on a low dose and ramp it up. He used the analogy of turning on a hot faucet...it takes a little while to adjust before you can turn it up to the max. Judging from comments on the forum, I don't think every doctor prescribes it this way, so you might want to talk to your doc about it.

3. It's best taken with food. Also, if it makes you nauseous, ask your doctor about splitting your dosage. Some people on here do it that way.

Other than nausea when on a high dose, I never have had any problems with Imuran. There are lots of threads on here with lots of info, so search around!

Good luck and keep us posted.

 

[glum chump]

I took Imuran for about three years before it lost its effectiveness. My GI had explained that it takes a while for Imuran to begin working in your body...that it could take up to three months before I started seeing any results, and he was right.

The only side effects I had with Imuran was some hair loss and a benign cyst that formed behind my ear.

 

[jaycee]

I've been taking it for over a year. Same result as glum chump-it has lost its effectiveness, but no side effects to report. I always have some something to eat when I take it and I split my dose.

Good Luck!

 

[Zalanicht]

I took Imuran for about three years before it lost its effectiveness. My GI had explained that it takes a while for Imuran to begin working in your body...that it could take up to three months before I started seeing any results, and he was right.

The only side effects I had with Imuran was some hair loss and a benign cyst that formed behind my ear.

Wha?!
I had something a cyst behind my ear and my cheek recently. Almost like a spider bite that wouldn't go away so they had to drain it.
I asked if it was a side effect of Aza and he said no but whatever.

 

[ChefShazzy]

Hi Megan, definitely split the dose to help reduce nausea. For the first few weeks, you might feel nauseous regardless, but it should go away. Hope it works out for you!

 

[chefcutiepie]

thanks to everyone who as written here so far you are all awesome and I dont know what I would do without this site. So my doctor has me starting at 75mg and now that ive read some stuff on here im wondering if he intends to increase it as i go, because I am slightly overweight and noticed that people have wrote that if you are heavier the dosage is higher. Guess I will call him and see what he says about it...

 

[bananaman]

I've been on 100mg for about 2 years and touch wood, everything seems to be OK. I too was worried about the stuff so about a year ago, I experimented with the dosage (against my consultants advise!) and lowered it to 50mg. After about a month all I noticed was aching legs, eyes and mild headache but this went away after about two weeks. I'm now back up to 100mg and went throught the same symptoms again but now ok.

I've had no more colds / flu than I normally have but I think that could be down to how strong your immune system is in the first place.

I feel quite lethargic but the consultant puts this down to CD in general!

Good luck!

Interesting to know that some people report loss of effectiveness.

 

[vickyhunter]

I've been on it for 6 years and I've recently had to increase my dose because I'm having a little flare up, but nothing major. I've not really experienced any bad side effects. I get infections more often like colds and tonsilitis but nothing compared to Crohn's, I'd take tonsilitis any day!
a lot of people have said they experienced nausea but I haven't at all in all 6 years!
and yeah people are right when they say it depends on your weight, although I don't think its strict, plus it depends on your height too! I'm 5"1 and weigh around 112lbs and I'm on 100mg but my mum is on the same and we have different weights and height and it works for her.
Hope it goes well for you
xxxxxxx

 

[vickyhunter]

I get infections more often like colds and tonsilitis

Just read this back and it's not what I meant to say haha. I don't get them any more OFTEN than any "healthy" person, but when I get them they tend to last a lot longer. Like I'll have a cold for 2 weeks rather than a few days as with most people, and with my tonsilitis when I got it I was ill for around a month and they had to reduce my azathioprine in order for me to recover. I think it must take longer because the immune system is weakened, but compared to other people I am ill no more frequently, just for longer bouts.
Sorry to have had to correct this, need to start proof reading haha
xxxx

 

[steve_lutz]

I was diagnosed with crohns in 1994. Had a resection done tried several meds and was eventually put on Imuran about 8 years ago. I am on 225 per day and have been for the entire 8 years. You should have your 6 MP levels checked routinely until you get within a therapeutic range. I have not experienced any side effects and my crohns has been under control since started the imuran. I do have some hair loss but I am a 55 year old male so I have no idea if it is due to the Imuran or just normal aging

 

[hawkeye]

I have been on it (started at 75 mg/day, now at 100 mg/day) for almost 20 years with no noticeable side effects. I also take 5-ASA (3000 mg/day).

Mark

 

[Sonic]

I went off of Imuran for a few years, and am starting to have very minor flair ups. I am going back on it 100mg/day. I wonder if going off of it for a period of time is good or not? Maybe it will help my body from getting used to it and therefore it will work longer.

The first time I was on it I had no side effects. Hopefully this is the same.

I did have a cyst removed from my back. But I'm not sure if this is related. Also have hair loss, but so does everyone in my family.

 

[spingirl]

I am wondering...the hair loss...it is severe or just a little bit?

 

[Sonic]

I think the hair loss is genetic...not related to Imuran. I wouldn't be surprised if you had zero hair loss.

 

[steve_lutz]

Your probably correct about the hair loss. Mine is gradual and I still have some hair even on top. I do have a question. It seems like almost everyone on this site is taking either 50 or 100 Imuran per day. When I was started on Imuran my GI kept testing my 6 MP levels and liver to assure that 1. I had a therapeutic dose and 2. I was not damaging my liver. I was having good results at 225 so he kept me there even though I was under the therapeutic curve. As I mentioned to date I have not had any issues with my liver and the Crohns is under control for 8 years now and I am not taking any other prescription medications but wonder if I need to try reducing the dose.

 

[vickyhunter]

I've not experienced any hair loss, Im a girl and my hair is long too, so I don't think it's something to worry about
xxxx

 

[spingirl]

Vicky - I hope you are right!!!

 

[vickyhunter]

also steve, I think it depends on your weight.
I'm on 100mg and weigh around 112lbs, I went down to 75mg a couple of years ago but my Crohn's flared up recently so had to go back up to 100mg so I figure this is the dose I should be on to control it. Does your dose correlate with your weight? i.e increasing weight, increasing dose
xxxxxxxxxx

 

[steve_lutz]

Vicky,
I don't think weight is an issue. I weight 170 lbs. The only way to be sure your getting the correct dose is to have your 6MP levels checked. There is a rather narrow therapeutic window for Imuran. Take to little and you won't get the maximum effect, too much and run run the risk of effecting your liver. Even if you don't get the 6mp test you should have your liver enzymes check every 4 months. I got up to 225 and was getting close to the minimum effective level so my GI said I could stay at this level since I was getting a good clinical response

 

[vickyhunter]

I have blood tests every 3 months for liver and kidney fuctions for azathioprine anyway... and the doctor worked out my dose based on my weight, as was my mothers dose, and other people in this forum have said the same. I understand what you mean though. I've never had this 6MP test, but will ask my doctor about it when I next have an appointment I hope you sort your dosage out
xxxxx

 

[littlemissh]

It is based on weight (most follow 1.5mg -2.5mg/kg)but some doctors test the enzyme used to break it down in the liver before you start. This is just to see if you should start at a lower dose. If you are already on it then there is no need to check. A lot of doctors don't check the enzyme and just check blood count and liver tests to make sure you are handling the drug.

 

[steve_lutz]

I think different physicians have differing views on the best way to dose Imuran. Using the calculations stated here I would be somewhere between 120 to 200mg. Using the 6mp tests I was still under the therapeutic dose at 225. I tried Pentasa, Prednisolone, restricted diets, and nothing worked until the Imuran. It is the only medication I take for crohns and have not needed a dose of Prednisolone for over 8 years. Medications and the human body are very complicated and most often unique to the individual so I would do as the previous post suggests and ask your physician. The worst that can happen is that you have a vial of blood drawn. Check with your insurance provider to be sure it is covered as it can be expensive

 

[vickyhunter]

well luckily I live in England so I don't have to worry about insurance, we have the NHS. I will definitely ask about it though, it sounds like an interesting test, I'd like to see my results. would it have to be done before starting the drug though? As I've been on it for 6 years so the test results may be inaccurate?

xxxx

 

[steve_lutz]

No it can be done anytime. Good luck

 

[kslade]

I am wondering...the hair loss...it is severe or just a little bit?

It doesn't happen for everyone. I had hair loss when I first went on Imuran. Chunks of hair would come out when I was washing my hair, but it went away after a few months. I was told that it's a side affect that some people can experience with Imuran from my GI. I never mentioned it to my GI cause I never really thought about it until someone else mentioned it on this forum. By then the hair loss was already gone.

I also still to this day feel nauseous when I take my pill. I try to eat with it to reduce this side affect.

 

[kslade]

It is based on weight (most follow 1.5mg -2.5mg/kg)but some doctors test the enzyme used to break it down in the liver before you start. This is just to see if you should start at a lower dose. If you are already on it then there is no need to check. A lot of doctors don't check the enzyme and just check blood count and liver tests to make sure you are handling the drug.

Very well said. My GI took tests before putting me on Imuran to make sure my body could breakdown the drug. Then a test to make sure my liver was healthy enough to handle it. It's known to be hard on the liver, which is why you're required to go for bloodwork regularly.