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Crohn's Disease Forum » Treatment » Imuran/Azathioprine/6-MP » Your experience with azathioprine?


08-25-2016, 01:44 AM   #1
Badtummy4
 
Join Date: May 2016
Location: California
Your experience with azathioprine?

Hi so I'm starting azathioprine soon and I just wanted to hear your stories with the drug?
08-25-2016, 01:48 AM   #2
ronroush7
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Location: vienna, Virginia

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I think with me it has caused my hair to thin. A year ago they had to cut the dosage in half.

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Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
08-25-2016, 07:05 AM   #3
eleanor_rigby
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Join Date: Aug 2012
Location: Cheshire, England, United Kingdom

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I've been on it 5 months and not sure it has even kicked in for me yet. Be prepared to give it at least 6 months to work.
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History:
2nd Generation affected

Symptoms since 08/2006 (age 17)

Emergency open bowel resection after perforation in 12/2011 (age 22) (wrongly diagnosed as burst appendix ). Three years remission following this unmonitored

Diagnosis:
Perforating small bowel Crohn's Disease 01/2016 (terminal ileum, duodenum)
Coeliac disease (age 26)

Meds:
50mg azathioprine (down from 75mg after my WBC dropped)
Gluten-free diet
08-25-2016, 07:56 AM   #4
JaimeM
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Hey, I've been on in since march. At first I had terrible nausea, it was awful. However, my dr had me start on the 200mg dose at full force instead of working up to 200mg. I think that would have helped. Also I had issues with my liver enzymes getting out of whack. It seems my magic number dose is 150mg. I've been on that for a few months now and no problems. Once in awhile i still get a bit of nausea which I can only really contribute to my azathioprine. I also am on Remicade. Between the two drugs I'm feeling much much better! Good luck! (Oh yeah, I've also had thinning hair, sunburn easier, nothing too consequential)
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Diagnosed Terminal Ileum Crohns 2008
Remicade 6yrs
Had a healthy baby boy 2014
Switched to Cimzia but didn't work 2015
Back to Remicade and added Azathioprine 2016
08-29-2016, 11:21 AM   #5
Ally1234
 
Join Date: Jan 2016
Location: Salisbury, United Kingdom
Been on 175mg since April. Haven't had any bad side effects but not convinced it's doing anything. Also had an issue with my liver test being high but it came back down so they continued medicine as normal.

08-29-2016, 11:27 AM   #6
eleanor_rigby
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Been on 175mg since April. Haven't had any bad side effects but not convinced it's doing anything.
Hi Ally this is the same as me - I've been on it since April (although only 50mg) and also not convinced it's doing anything. I'm really starting to despair now.
08-29-2016, 11:30 AM   #7
ronroush7
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Hi Ally this is the same as me - I've been on it since April (although only 50mg) and also not convinced it's doing anything. I'm really starting to despair now.
Maybe you need to be on a higher dosage. Ask your doctor

08-29-2016, 11:30 AM   #8
Ally1234
 
Join Date: Jan 2016
Location: Salisbury, United Kingdom
Hi Ally this is the same as me - I've been on it since April (although only 50mg) and also not convinced it's doing anything. I'm really starting to despair now.
I'm on pentasa and pred aswell and every time I reduce my pred all my symptoms get worse. They wanted to put me on humira but they did a flexible sigmoidoscopy and said that from what they can see the inflammation has improved so they aren't putting me on it yet. I need to have a colonoscopy as they said there must be some disease further in since my symptoms are still bad.

08-29-2016, 11:34 AM   #9
eleanor_rigby
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I had a colonoscopy in December, was on pred Jan - May during which time my symptoms stayed completely the same not better nor worse. Then been on aza since April. I have a constant pain where my ileum is (and where my disease is active). Have not had a colonoscopy yet to see if the aza is working but all blood tests are good. Maybe I should ask if I can have pentasa as well. I can't have humira unfortunately. Let me know when you have your colonoscopy. I did speak to one user on here that said she was on 25mg of aza for three months, which did nothing, then upped it to 75mg and she finally turned a corner after a further 6 months on that dose.
08-29-2016, 11:43 AM   #10
Ally1234
 
Join Date: Jan 2016
Location: Salisbury, United Kingdom
Ive never had a colonoscopy as they said my inflammation was too high and it would have been dangerous so i have only had flexible sigmoidoscopy which only goes so far. I've been on pred since February when I was in hospital. it worked like magic at first on 40mg, my doctor desperately wants me off it but I can't seem to get below 15 mg without everything getting worse again. The aza seems to really depend on the opinion of the doctor treating you. When I first got it i mentioned that I knew people who had started on 50mg and then increased to 100 mg or further but he said that he wanted to just hit my disease hard with a high dose. It's the one thing that annoys me about this disease, not only is it so different from person to person but every doctor seems to have a different idea of how to treat it, some like to hit it hard with the high drugs and others seem to use the lower drugs for as long as possible before trying the next level. It feels like my chances of remission are greatly changed depending on which doctor treats me

09-04-2016, 09:47 PM   #11
darubo
 
Join Date: Oct 2012
Location: Lufkin, Texas

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I had a terrible allergic reaction to Azathioprine; flu-like symptoms, tremors, vomiting, I felt really horrible and went to the ER and was admitted. The doctors didn't figure out for 2 or 3 days that I was allergic to the Azathioprine; the nurses were still giving me my regular daily medications and I had just started taking it and had taken it for about a week and a half, so they were still giving it to me. I was in a teaching hospital and one of the medical students suggested my symptoms were consistent with an allergic reaction to Azathioprine, so they stopped it and I started feeling better almost immediately. I currently take Entocort (budesonide).
I wish you all the best with your experience with the medication and I hope it helps you. I just couldn't tolerate it.

Dana B.
Lufkin, TX
09-05-2016, 05:31 PM   #12
aypues
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I couldn't tolerate 6-MP (analogue to Azathioprine). It made me completely checked out of reality, like a zombie. I couldn't see right and was just a space cadet. Now they have me on CellCept instead, plus Remicade.
09-06-2016, 06:59 PM   #13
SahrThundermane
 
Join Date: Sep 2016
It works, although the possible side effects can be pretty horrible (thankfully I haven't had to deal with them).

My most recent problem has been photosensitivity. My wife and I have travelled to carribbean a couple times in the past year and I noticed I get hives which eventually turn into pus fulled blisters after hours of strong sun exposure (with spf 50). Please be mindful of the sun as AZA can also increase the risk of skin cancer (as well as some other cancers) and increase the risk of severe infection (I mention this because of the possible blisters and peeling skin from the sun).

I have been on a very low dose for years now (50mg/day). I find this dose works ok, but I still have some pain and a lot of nausea. I prefer to stay on the low dose of Imuran and treat my (mainly night time) pain and nausea with cannabis.
09-06-2016, 06:59 PM   #14
SahrThundermane
 
Join Date: Sep 2016
Edit: double post.
09-11-2016, 04:31 PM   #15
hawkeye
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I was on it for almost 23 years, I worked well.
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Diagnosed since 1990
Current Medications: None currently. Was on Imuran (150mg/day) and 5-ASA (3000 mg/day) as maintenance meds prior to surgery
Surgeries: Left hemicolectomy 2014.
09-11-2016, 06:56 PM   #16
JackG
 
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Location: Kankakee, Illinois

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I had an immediate allergic reaction to azathioprine, where both arms broke out in severe hives, or something like it. I couldn't convince the office staff of my GI how serious it was to get in right away, so I walked into their office and showed it to them. It scared them; they brought a nurse out and it scared her; she put me in a room and 5 minutes later the GI came in , and even he backed away. Needless to say, I was taken off of it.

It's the only allergic reaction I've ever had.
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Diagnosed 1982
Ileostomy and reconnect
Meds over the years: Sulfasalazine, Pentasa, Prednisone, Entocort, Azathioprine (allergic reaction)
Present: Humira
09-13-2016, 06:42 AM   #17
maher
 
Join Date: Dec 2013
Hey there, I had a severe reaction to azathioprine and 6 mercaptopurine. Totally messed with my liver function. But everyone responds differently. Good luck

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Crohn's Disease Forum » Treatment » Imuran/Azathioprine/6-MP » Your experience with azathioprine?
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