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PLEASE SHARE YOUR IMURAN WISDOM!!!!!

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Ulcerative Colitis
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Posted 1/22/2014 11:44 PM (GMT 0)
i just started and would really, really appreciate your stories!
you dont have to answer all of these questions, but they're just some questions i have :)

1) did imuran work for you?
2) how long did it take to work?
3) how long have you been on imuran?
4) did you develop any bad side effects?
5) do you plan on taking it for life?

THANK YOU SOOOO MUCH!!!!!
Posted 1/23/2014 12:26 AM (GMT 0)
I think so, but I'm also on Remicade.
I'm not sure because I was on steroids when I started it.
Eighteen months.
No, but my liver tests got weird, so my Dr added allopurinol.
Yes, if it keeps working.
Posted 1/23/2014 12:35 AM (GMT 0)
Imuran/6mp takes multiple months to reach therapeutic levels in your body. Yes, you can be in it for life. No, no side effects. Imuran is very different from prednisone which has common side effects. Your immune system is weakened some, so expect yourself to have colds slightly more frequently, and for them to last slightly longer. Be more vigilant with hand washing during cold season. Been on 6mp a year now.
Posted 1/23/2014 1:05 AM (GMT 0)
I only last three weeks on Imuran. So nauseous and fatigued...even continual Zofran didn't help me. 6MP worked.
Posted 1/23/2014 1:08 AM (GMT 0)
I take 6mp and it has worked for me. I've had some ups and downs while on it but overall, i've been doing well on it for 2+ years. It took a bout 4 months for me to get into remission, i had to try it with allopurinol and in a variety of doses, i had to get frequent blood work - it was a hassle. no side effects. I don't know if I will be on it for life. I guess i will stay on it as long as it works and as long as there is nothing else available that works better, like some one-dose miracle pill that cures this condition permanently.
Posted 1/23/2014 1:20 AM (GMT 0)
Well, I started Imuran five days ago for the first time, and this morning I woke up with a back pain so bad I couldn't move at all, and I am 100% certain it's not caused by any kind of injury. Tomorrow morning I will have a blood test for pancreatitis, and I pray for it to be negative. I am so mentally exhausted, I'm in no condition to fight pancreatitis, and search for a new therapy. No other symptoms of pancreatitis, other than severe middle to upper back pain, but still I'm frightened.
Posted 1/23/2014 1:50 AM (GMT 0)
I'm was on 6mp as well but it's similar to Imuran. It works the same - 6mp is the purer form while Imuran breaks down into 6mp in the liver.

1) did imuran work for you?
6mp never worked right for me. It did however keep me out of severe flares. I just couldn't get into the right therapeutic range in order for it to work right.

2) how long did it take to work?
I started seeing slight improvements at 7 weeks but I didn't notice a marked difference until 3 months.

3) how long have you been on imuran?
I was on 6mp for 6 years

4) did you develop any bad side effects?
I had the beginning side effects such as slight nausea, headaches, mild hair loss and fatigue but it went away after my body got used to it. Also, when I got sick, I really got sick. But luckily it only happened once a year. However, I had to discontinue it because the combination of my Remicade and 6mp caused me to develop foot neuropathy.

5) do you plan on taking it for life?
Nope, already discontinued it. But it can be taken long term as long as there are no complications.
Posted 1/23/2014 2:27 AM (GMT 0)
Imuran tasted awful, but worked wonders for me. After a month I was living a normal life, there were no signs of UC at all. Unfortunately, I got pancreatitis and had to stop. If you don't get pancreatitis, you'll love it.
Posted 1/23/2014 11:10 AM (GMT 0)
Imuran did more harm than good for me. Started Imuran while taking Pred. After a couple weeks Pred free I noticed fatigue and some back pain. Like many others I felt I had probably slightly injured my back. These 2 symptoms worsed until I could barely function. I craved sleep all the time and would fall out whenever I sat down. Wound up in the ER. Doc put me back on 40 mg Pred and I stopped the Imuran cold turkey. Since, I have refused any meds other than probiotic and have been slowly (& I mean slowly) tapering the Pred. It's been almost a year and I am at 5mgs. I let my body dictate the drop. Feel better than I have in almost 3 years and having normal bms. Of course I have gained 25+ pounds and have Moonface, but least I can eat!
Posted 1/23/2014 11:35 AM (GMT 0)
1) did imuran work for you?
Yes

2) how long did it take to work?
With Uceris, 2-3 weeks

3) how long have you been on imuran?
In 2005-2007 and since march 2013

4) did you develop any bad side effects?
Nausea but I trade this in for a bleeding colon any day.

5) do you plan on taking it for life?
Yes as long as I don't get colon cancer
Posted 1/23/2014 3:00 PM (GMT 0)
1) did imuran work for you?
I think it does

2) how long did it take to work?
well. was also on prednisone and asacol when first started

3) how long have you been on imuran?
1997, started on 200 mg, way too much- borked out liver enzymes on 50mg since ~2001 Dosage is in theory based on weight though I am on a lowish dose

4) did you develop any bad side effects?
well yes at higher doses and I do notice infections take me down longer than for other peeps

5) do you plan on taking it for life?
Sigh. Until there is a "cure" I guess.
Posted 1/23/2014 3:06 PM (GMT 0)
1) did imuran work for you? Yes it changed the severity and number of flares to less.

2) how long did it take to work? Took about a month, with blood tests to get me into the optimal "Therapeutic levels"

3) how long have you been on imuran? 8 years

4) did you develop any bad side effects? none whatsoever

5) do you plan on taking it for life?yes

I was afraid of imuran due to a lot of misinformation. My GI doc kept at me to try it, everything changed for me once I got on it. People who say they'd rather have surgery than go on Imuran are just nuts in my opinion. Imuran has been around since the 50's & has a great safety profile. It probably doesn't work great for everyone but it sure did for me.
Posted 1/23/2014 6:28 PM (GMT 0)
Hi there.  I have not been on it too long but here's my experience so far... 

1) did imuran work for you?---I can't tell yet.  I've been on it 3 1/2 weeks and things have most definitely improved but I am also on Prednisone so I'm thinking the improvement is most likely from the Pred. 
2) how long did it take to work?---see #1
3) how long have you been on imuran?---see #1
4) did you develop any bad side effects?---No side effects.
5) do you plan on taking it for life?---I plan on taking it as long as it maintains remission and I don't have other complications from it. 

Best of luck!

Posted 1/23/2014 6:51 PM (GMT 0)
1) did imuran work for you?

I think it is, I'm also on Remicade, Prednisone and Asacol HD

2) how long did it take to work?

My improvements were right away due to the other medications I'm on, but I feel like I got a little boost and started healing faster again after being on it for 4 months.

3) how long have you been on imuran?

5 months.

4) did you develop any bad side effects?

I attribute my bad side effects to Prednisone.

5) do you plan on taking it for life?

Yes, my GI wants me off of Prednisone and Asacol HD. He wants my maintenance drugs to be Remicade and Imuran.
Posted 1/23/2014 6:55 PM (GMT 0)
I thought I read some people taking Imuran had some crazy hair side effects, in fact I was sure Red said yrs ago that it changed the color of her hair to a weird orange color and that others mentioned they too had issues with it making the color of their hair weird and even curly for some people and that you have to stay out of the sun cuz it can really burn your skin bad.

I tried it and felt terrible nausea and severe headaches so my GI at that time took me off it right away cuz I was losing weight rapidly while on it as well.
Posted 1/23/2014 7:13 PM (GMT 0)
When I got my23andme results, one of the things I noted was that 10% of the population experiences toxicity to the med (fortunately, I am not in that 10%- have been on this med almost 18 years now. Here is more info: During metabolism, hypoxanthine-guanine phosphoribosyltransferase (HGPRT) converts 6-mercaptopurine to cytotoxic 6-thioguanine nucleotide analogues, while thiopurine methyltransferase (TPMT) inactivates 6-mercaptopurine through methylation to form 6-methylmercaptopurine.

Approximately 11% of the population has reduced TPMT activity and 0.3% of the population has true deficiency of TPMT. In these patients, active 6-mercaptopurine accumulates, and a larger proportion of 6-mercaptopurine is converted to the cytotoxic 6-thioguanine nucleotide analogues, which can lead to bone marrow toxicity and myelosuppression.

Twenty-eight variant alleles of TPMT have been identified, most of which have been associated with decreased activity in vitro, but only a few of which have known clinical effects. TPMT*3A, the most common variant (5% frequency in Caucasians), includes two nonsynonymous coding changes: an exon 7 A154T variant and an exon 10 Y240C variant. The second most frequent variant, TPMT*3C, contains only the exon 10 variant and is more common in Asian populations (2% frequency). TPMT*3B occurs rarely and contains only the exon 7 variant. TPMT*2 is a rare nonsynonymous variant (A80P) with reduced catalytic activity. Other variants, such as TPMT*8 occur more commonly in African populations (2% frequency).[6]
Posted 1/24/2014 5:39 PM (GMT 0)
Just an updatr from me. I got my blood works done today, and everyhting is ok. No pancreatitis YAY! Everyhing is in order except my ALT levels are higgh, which is no wonder since I am on antibiotics. Anyway, what I have concluded is that Imuran is hitting me pretty hard even in early stages of my therapy, but I have to wait until my body gets used to it. God, this was a long day...
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