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Scared of Imuran

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Ulcerative Colitis
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Posted 10/9/2007 1:23 AM (GMT 0)
I just had a colonoscopy today and my GI said my UC is pretty bad. Ive been on 4800mgs of Lialda for a few months. Before that it was Asacol. I left the hospital today with 3 scripts. Canasa is one, Ive done that before and it is really expensive, even with my insurance, and I dont even know if it helped...I will take it again anyway. The other is a foam or something, dont even know what that is. The third is Imuran 100mg.

2 things that hit home with me are that Imuran has a generic that is so much cheaper than anything ive been on for UC. The second thing is the hair loss. I take biotin but I dont think that'll be enough. I am so obsessed with the hair Ive already lost from mesalamine, I dont wanna lose anymore.

Also, what is Imuran. Is it just another anti-inflammatory?

Do I still need the Lialda or Asacol too?

Do people take Imuran temporarily and then go back to Lialda or Asacol?

Does hair loss from these meds reverse after the meds are out of our systems?

Do any of you just want the dang operation so you can put an end to this crazy world us UC sufferers dwell in?

Posted 10/9/2007 1:41 AM (GMT 0)

Hi, I can just give you a bit of information with my experience of Imuran(Azathioprine). There are a lot of people on this board that know so much about this drug and disease.

Imuran(Aza), and 6mp are immunosuppressive drugs. UC sufferers tend to have an overactive immune system so Imuran is supppose to suppress it. Therefore, it is not an anti-inflammatory. I have been on Imuran for about 8mos now. I did lose a small amt of hair in the beginning, but not even close to the amt I lost on pred. The Biotin helped me a lot and it seems like it all grew back and then some.

I still take the same amt of asacol along with Rowasa enemas. My dosage was not lowered.

I was really nervous about this drug. It took me a long time to decide to get on it. But I needed some relief. It did take quite a while for it to kick in for me(about 4mos). I have had a mini flare up, but so much easier than my other flares have been.

I had a surgery scare that ended up to be a big, horrible mistake. And I hate, hate, hate, all the drugs, but I will do everything I can to keep my colon for as long as possible, hopefully forever.

Good luck to you

Donna

Posted 10/9/2007 1:41 AM (GMT 0)
I understand your confusion because Uc and it's medications can be a daunting thing. Imuran is an immune suppressing drug. It lowers your entire immune system which is what we have, an overactive immune system that mistakes our colons as foreign invaders. So the Imuran will help counter that and it allows the colon to heal. It takes a while to work though, it's not an overnight thing. I can start working around 3 months to a year, depending on how bad the inflammation is. Normally yes, you stay on the 5-ASAs such as Lialda, Asacol, or Colazal because these are maintenance meds. Imuran is to be taken long term because once you stop it, you may start flaring again. I'm sorry to say that yes, in some people, the immune suppressors can cause hair loss but normally it's only temporary. I am on 6mp which is similiar to Imuran and I lost hair for about 2 months but not large quantities and after the 2nd month, all that stopped.
Posted 10/9/2007 2:32 AM (GMT 0)
ditto to the 2 other posts. it is common to be terrified of it at first, but pred is a MUCH worse option in the long term, and it isn't as bad as it sounds. scary as an idea, but promising drug in reality.
Posted 10/9/2007 2:35 AM (GMT 0)
Thank you both for your responses. It is so cool how quickly questions get answered on this forum...I guess we all understand the importance of urgency :)
It makes sense that I need my colon to heal and since anti inflammatories arent working, I guess I need my immune system to give my colon a break and I guess I need Imuran to do that.
Im a little confused about why I cant go off Imuran after my colon heals and just use Lialda as a maintanance drug.
Also, should I try other avenues first, before Imuran. Like: waiting to see if Lialda will work eventually, or alering my diet, or using canasa and prednisone a little longer.
One more thing, is Prednisone worse for your body than Imuran?
Again thank you all for your support.
:)
Posted 10/9/2007 11:02 AM (GMT 0)
Yes, Pred is worse for your body because it causes too many long term complications one of them being bone loss. You have to look at UC like this, your body is in a constant state of battle - your immune system being the aggressor and your colon is being attacked. If you were to take Imuran, it will stop the attack on your colon. If you stop, the attacker will go back to what it was doing. Lialda is nothing more then a bandaid for the colon. Yes it can help inflammation but if your body only responds marginally to this, then you may need that extra boost to let your colon heal properly. Not to mention that it takes so long for it to actually work anyway that if you were to quit and then restart, you would have to suffer thru the initial phase again. As for the other avenues to try, that is up to you. You can try diet if you feel this will work maybe in conjuction with the Canasa. Where in your colon is your Uc? Is it only rectal? I'm just wondering why the doc would give you suppositories instead of the enemas because enemas will cover more area then the suppositories.
Posted 10/9/2007 11:37 AM (GMT 0)
Im not sure why the doc gave me the meds he did. I was still kinda "under" when we talked after my colonoscopy. I know that after my first colonoscopy at the beginning of the year, My other doc said my whole colon was diseased. Ill find out more from my new doc on the 29th. He is supposed to be one of the better GI docs in the area so I should just trust him on the Imuran. And you all make good points on why people with UC need it, and I havent been the same since being diagnosed in Feb. 2007 so the Lialda probably will never be enough. Also, Ive noticed blood in my stool since I was a teenager, and even though I didnt have my first flare until Jan.2007, Ill bet my colon has been inflammed for years...without treatment.....so maybe the Imuran will finally give it a chance to heal.
Thank you Sherry for your feedback :)
Posted 10/9/2007 1:39 PM (GMT 0)
Six years plus on Imuran and still here to talk about it.

Like you, I was scared to read the side effects of Imuran. But it really has worked so well for me. I can't imagine where I'd be without it. It keeps my disease under control, and when there is a small outbreak here or there, rectal meds quell that in a hurry and get things back to non-inflammed status!

I hope it's as successful a drug for you as it has proven to be for me!

Mitz
Posted 10/9/2007 1:53 PM (GMT 0)

Hey 30!

I'm 32 and just did my labs for Imuran on 10/05.  I'm scared as hell and seeking a second opinion/Dr., plus I cannot take the 5ASA's anymore, I am in the 1% that has a hypersensitivity to it, they were great for my colon but not my kidney.  So now I am worried about the side effects of the Imuran, especially hair loss, I was taking 400mg of folic acid and doc wants me to take another 400mg of folic acid. my hair is my favorite feature about myself (outside, not inside) and to lose that would really make me depressed, I am sorry you are going through that!!!

I hope you can get some relief soon....we can go through this together!

Posted 10/9/2007 3:37 PM (GMT 0)

I really, really, really don't want to add to your apprehension, but be very careful and very observant of your bodys reaction (if any) to Imuran. I am one of those people who had a very bad reaction to Imuran...even after having the tests that try to preclude you from having issues.

I am also a HUGE hater of prednisone, so I get to be the gloomy gus I guess.

The upside is....that after being hospitalized and basically doomed to surgery by my G.I, I had some weird recovery and am currently med free and in remission. The only changes I made were to stop drinking caffeine and drinking Diet Coke...go figure.

Any how...good luck...just add my experience to the list of all of those that have posted here as a "pay attention" heads up. I hope everything goes well.

Posted 10/10/2007 7:16 AM (GMT 0)
Wow jcarroll...lucky you.
And Beth, Ill take you up on that, we'll go through this together :)
I started Imuran today, even though the warning said that long term use can cause tumors. Im goin for it anyway. What the heck. I am curious to see if Ive been missing out on something the last half of my life, what I mean is maybe I dont know what normal is because Ive had this untreated disease for a long time, probably.
And the hair loss...top of my mind. Well for now. Lol
Posted 10/10/2007 10:54 AM (GMT 0)
Hmm if you do lose hair, just remember that bald is the sexy thing nowadays! :) Good luck and I hope this gets you into remission.
Posted 10/10/2007 1:57 PM (GMT 0)
Hey 30 yr old................again ditto....the most important thing is feeling better. Azathioprine (Imuran) is definitely what seemed to make the diff for hubby. He started on 75 and is now at 150 with monthly blood test monitoring. I know how scary it is to read all the warnings and side effects of the drug. When I knew he was going to be prescribed that the first thing I did was print off and read about it and cried like a baby unbeknownst to him. I was so scared.

But you know....seeing him finally feeling better and getting back to his old self - there is no amount of money in this world that you could give me to to not have this feeling of contentment. Of course we need to hope that this drug is ok for him - time will tell - he has some great doctors watching out for him - the testimonies from this forum is so reassuring too.

I know at 30 hair loss is a big deal - but try to keep that in the background of your concerns - you need to feel better and be able to get on with life. Not to sound corny but beauty really is skin deep and some thinning of hair or hair loss is truly not that important in the grand scheme of things. Honestly.
Posted 10/10/2007 2:12 PM (GMT 0)

Just hoping to reassure you about the hairloss...for me it was the pred that caused my hairloss and I haven't noticed it particularly with the Imuran - that might be because I took steroids at the same time as I went on Imuran but I haven't had any more hair loss since getting the pred out of my system, the whole time I've been on Imuran (about 18 months).

I think it might be different for different people but the Imuran is working great for me- it has so far allowed me to live pretty much symptom free - I even backpacked around Africa for a month and didn't have a single bout of D!. Plus, if the imuran allows you to get into a good solid remission - you won't need the pred, which, in my experience, is the worst culprit for hairloss.

Posted 10/11/2007 6:20 AM (GMT 0)
Thanks for all of the support guys. I think that like it or not I would have had to start Imuran and you all made that much easier to do. If it werent for this forum Id feel so alone in this, so thanks :)
Posted 10/11/2007 1:05 PM (GMT 0)
I know you got a lot of responses..but heres one more :-)

3 years on Imuran now. NO side effect, no complications. I expected something, since every other medicine had given me problems. In a matter of a few years, I had done prednisone (70 mg), rowasa (almost went bald!), and every other pill you can try. This drug put me in remission, and has kept me symptom free.

This was my last resort before surgery. I was THAT sick. I have had this disease my whole life, and I was 33 and at my sickest yet.

I have a stressful job with two little boys. I cant believe this remission has lasted 3 years...I wont be going off Imuran anytime soon.

Good luck!!!!!!!

Michele
Posted 10/11/2007 4:37 PM (GMT 0)
Wow Michelle, that's great. Im so happy for you. You need all the energy you can get with two little boys, I know cause my mom had the same task. Im on Imuran 100mg now and I am going to stay with indefinitely.
Its pretty low on this thread to ask, but how long is it taking for people to see results on Imuran, and why don't people come off of it after being in remission?
Posted 10/11/2007 5:00 PM (GMT 0)
YOU CANNOT GET OFF MEDS EVER.
YOU CANNOT GET OFF MEDS EVER.
YOU CANNOT GET OFF MEDS EVER.

Print that and tape it to the inside of your eyeglasses. <g>

This is a chronic, life-long disease. The way to live with this disease and hang onto your colon is to get it into remission and keep it in remission. KEEP IT IN REMISSION. If you stop your meds, it may not be tomorrow, it may not be next week or next month, but you will flare again. Then you will need prednisone or other drugs to get you back into remission, because it takes the Imuran several weeks/months to kick in and put you back into remission. And it may not work next time.

Get yourself in remission and stay in remission. STAY ON YOUR MEDS!

Mitz, six years and counting on Imuran -- hopefully on it the rest of my life, because that means I will never have another bad flare.
Posted 10/12/2007 1:31 AM (GMT 0)
YOU CANNOT GET OFF MEDS EVER.
YOU CANNOT GET OFF MEDS EVER.
YOU CANNOT GET OFF MEDS EVER.

DITTO! I only stay in remission with meds. Left to my own devices, I get sick and quickly become bedridden and then take a vacation in the hospital with an IV drip in my arm. Since Id rather go to Hawaii...Im sticking with my drugs. I am hoping Imuran continues to work for me like you Mitz.

As for how long it took to see results, it was around 2 months I think. My boys dont remember me being sick which I am thankful for. They do hear me say "I need to take my tummy medicine" a lot....but they dont remember the bad stuff. Yea...its hard enough to be a mommy when you're healthy :-)

Michele
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