Those no longer on Azathioprine?

[Bld]

I am starting Azathioprine tonight and my consultant has said if it works it is likely to be a long term medication for me. I am curious, those of you who have been on itin the past but are not now, why did you stop taking it? Did it not work, were the side effects too bad, did you go into remission and your GI said it was ok to stop? Just curious really!

 

[bigtruck]

Was on it for 12 years doc stopped it after my resection surgery.

 

[Jennifer 02]

Thanks so much for asking this question! I am wondering the same thing. I will be starting Imuran soon and possibly Remicade as well (depends on the MRI results). I am wondering how long most people are on it why they eventually go off. Also, really worried about hair loss (I know it's a little thing, but still worried. May start Biotin supplements just in case).

I am currently on Pentasa only (have been for 10 yrs).

Good luck to you!

 

[Bld]

You too! I hope I don't get hair loss, going grey and bald would not be good!

 

[Misty-Eyed]

I was on it for a few years to try and help me get off of prednisolone. It didn't work though to eventually came off it.

 

[changeiscertain]

I was on it for about a year. It's hard to say whether it was working or not because I was also doing an extremely slow taper of Prednisone. I got down to 5mg of Pred twice and started to flare both times and had to re-up. I eventually stopped the Aza because I lost my job and insurance and couldn't afford the blood tests every 3 months.

 

[Cross-stitch gal]

I was on it for a couple of months. My doctor took me off because my liver count was too high. But, at that time I was also on, asacol and prednisone. So, I think the actual problem there was too much drug at once. I'd be willing to go on the azathioprine again if my doctor would allow it and have me try it alone. Especially since this drug had started working for me at the time I was taken off it.

 

[Irene3]

Iv been on imuran, several times. Didn't improve my crohns and I hated that everytime I'd go out into the sun, within 5 min I'd feel like I'd been in the sun for hours. Then hours after being in the sun, I'd feel like I had sunburn, you know that burn feel on your skin. Hated it. Recently my GI agreed to 6mp instead, which I'll stay on long term with humira.

 

[Scifimom]

After a year on the higher dose I flared, obviously it wasnt enough. I am on Humira now. During AZA I was losing my hair and my skin looked like I just hit puberty (at 36). I stopped March 2012 and went on just with Humira. I am in remission since January 2011. For six months I was taking both humira and aza.

 

[poopaholic]

it gave me pancreatitis. I was the lucky 15%.

 

[Dobermonster]

I was on Imuran until last Friday, when it decided to cause me acute pancreatitis. It's an uncommon side effect, but something to be aware of. Not sure what we'll try next.

 

[notfullyfathomed]

I was on 6-MP from when I was 12 (I'm 26 now), and switched to azathioprine last summer because it's easier to adjust the dose. Azathioprine and 6-MP are basically the same drug -- aza is metabolized into 6-MP in the body.

I tolerated the 6-MP really well, and have zero regrets going on it -- it basically let me get through high school, college, and my first job living almost as a person without Crohn's. They had to adjust my dose every so often based on blood tests, and I became anemic because of my dose -- with a little iron supplementation and slightly lower dose my blood counts came back to normal. Otherwise, no major side effects. I did occasionally get a little splotchy in the sun and had to be careful with subscreen (I'm very fair, though), but no hair loss.

Over the past year I've developed a delightful new symptom, my friend the partial obstruction, so I've recently added Remicade. I should be on aza for about 6 months and then I will be just on Remicade. I can't say definitively but I think the medication change is due in part to me not taking my pills, and in part because I did not immediately go on prednisone when I had symptoms of a flare this time around. In short, I'm paying for my remission-induced laziness.

 

[Stephie]

I started it 13 days ago - unfortunately I have just got out if hospital after developing azathioprine induced acute pancreatitis. Another one of the lucky 15%! I hope it works for youn:ysmile:

 

[mitsudrew]

I was on Imuran for about 5 years starting in 1994 along with Prednisone and Asacol. The combination of these meds got me by and my Crohn's went into remission after slowly tapering off the meds in 1999.

In 2004 I had a nasty flare up and was put on Remicade along with imuran (again) and I took these two meds together for about 1 year until I eventually tapered off because the combination Remicade and Imuran was suppressing my immune system so much that I would get common colds every month. Some days I would forget to take the imuran and evenually told the doctor know that I missed my doses frequently. He decided to get me off the imuran. I have been off imuran since 2005 and only take Remicade. As of today I feel great and have no symptoms or problems. I have been on Remicade since 2004 and it has been a blessing to say the least.

From 1999 to 2004, which is when I wasn't on any meds I was still having some pain and symptoms, but they were managable. Since being on only Remicade I haven't had any bowel issues whatsoever...Thankfully!!

Diagnosed w/Crohn's in 1994 at 12 years old

Current med:
Remicade only since 2005

Previous Medications:
Imuran
Prednisone
Asacol

 

[mickh1980]

Hi,

I've been on Azathioprine for about 13 years, down to just 5mg a day, and rarely have many symptoms other than a bit of pain now and again, have never required surgery and don't recall any flareups other than a couple of days of pain every year or so. After initially taking prednisone when first diagnosed for a few months this is the only medication i've taken

My Doctor here in the UK has suggested that it might be time to stop taking it all together as its such a small dose, but he's left the decision down to me. Obviously if i can avoid taking medication i will but equally i've been going along just fine on the smaller dose so don't want to rock the boat so to speak.

Any advice would be useful if anyone has been in a similar situation

 

[kllyeve]

I was on Imran for a week and a half and then developed Acute Pancreatitis so I stopped taking it.

Yep, one of the luck 15%. - Why couldn't that apply to a winning lottery ticket??

 

[Hann]

I hope it works for you Ive been on azathioprine for a few years now and had no side effects (touch wood!)

 

[SkinnyNinny]

Hmm, well I was on it for two days and when I went out in the sun it felt like my skin was burning. I work as a forester so it's not for me, and I spend lots of time outside. I just stopped taking it on my own.

Oddly, my doctor prescribed this with me showing no symptoms! New doctor, he says it is a maintenance drug. I had no idea about these side effects and he didn't even warn me to be on the lookout for pancreas problems.

My philosophy is, if the side effects are worse than my symptoms, it's a no-go. I don't blindly obey those in the medical profession - except my surgeon, I trust him since he basically saved my life. These other drug pushers, not so much. My 2 cents worth...

 

[Hoshino]

This is my first post but just wanted to chime in on the subject.

I've been on Imuran since 2006, and it worked by itself until about early 2010 when I attempted to taper off the drug. I wound up having a severe flare and returned to my normal dose, however it now seemed to be ineffective. I was advised to go on Humira (40mg) as well, which I inject once every two weeks along with 125mg of Imuran daily (2 and a half pills).

I've attempted to taper off Imuran a couple times since starting Humira, and every time I go down to 50-75mg I start to get abnormal bowel movements and abdominal pain. Nothing too severe, but annoying enough to notice a change in my overall wellbeing.

During each taper I found that I started to feel better on 100mg (two pills), so I would move forward and reduce my dose further by 25mg and my condition would worsen.

At the present moment I am attempting to taper off again. I'm currently at 75mg and I've noticed a change in my overall wellbeing (occasional cramps, decreased appetite, irregular bowel movements, etc...). Which leads me to believe that Humira isn't as effective (for me) without Imuran.

In summary, Imuran and Humira together have worked very well for me to the point where I am in remission. I'm starting to think I should go back to 100mg and just maintain that dose until some geneticist/scientist develops a more permanent fix.

Stats:
27 year-old male
Vegetarian for 8 years (eat fish occasionally)
Do not drink at all
Smoke marijuana regularly
135lbs
Currently on 40mg of Humira every two weeks
Prescribed 150mg of Imuran daily, but have experienced success at a lower dose of 100mg. Doses lower than 100mg cause general symptoms of Crohn's to appear.

 

[crazycanuck]

I was on it for a while and it worked very well for a long time, I'd consider it remission. Then I had a close friend pass away which of course induced incredible stress and full on flare. I did take it with Remicade for a while but then decided to stop that with it working so well.

 

[Stacey]

Hi,

I've been on Azathioprine for about 13 years, down to just 5mg a day, and rarely have many symptoms other than a bit of pain now and again, have never required surgery and don't recall any flareups other than a couple of days of pain every year or so. After initially taking prednisone when first diagnosed for a few months this is the only medication i've taken

My Doctor here in the UK has suggested that it might be time to stop taking it all together as its such a small dose, but he's left the decision down to me. Obviously if i can avoid taking medication i will but equally i've been going along just fine on the smaller dose so don't want to rock the boat so to speak.

Any advice would be useful if anyone has been in a similar situation

I have the same symptoms like minimal pain and never taken anything in the 9yrs of being diagnosed, but after my 3rd colonoscopy i have been told its serverly active and i need to take meds if i dont want to get bowel cancer, panceatitis etc... all the nastys the come with this disease i guess.. So as of tomorrow i have to start taking Aza 50mg 3x day on its on no other meds, Glad this was posted gives me hope that it works for alot of people. Really not looking forward to taking anything.. cant stand swallowing pills. :ybiggrin:

 

[Perfer]

i started imuran ithink it was about 2002, I was on pentasa and remicade before that, imuran put my crohns into remission. im still on them so its about 10 years for me, my doctor said since I have a very aggressive crohns that I will likely be on them for a long time.. I still have an underlying active crohns even on imuran but it is very manageable.

I still suffer from fatigue often, but I have not have a big flareup for close to 8 years id say. I do have a stoma so maybe that has been a factor too.