Crohn's Disease Forum » Treatment » Imuran/Azathioprine/6-MP » Azathioprine opinions experiences and risks


01-02-2018, 03:44 AM   #1
eagel
 
Join Date: Feb 2015
Location: carmarthen, United Kingdom
Azathioprine opinions experiences and risks

Hi
I have been on MEZAVANT and humira weekly injections which have not been completely working.
My new gastroenterologist has now put me on azathioprine 100mg .
My question is what are your experiences and opinions of aza and the side affects, is this just a lot of scaremongering as the benefits out way the side affects?
with regard to the side affects surely the blood test frequency would detects problems and then one can deal with them?
Would blood test detect Lymphoma or the other cancers, so one can act before it is to late?

Experience opinions greatly appreciated to put my mind at rest. i am in a corner at the moment going (running)to the toilet 25 times plus in a 24 hour period and heavy bleeding with pain etc.
Steroids caused cataract so no good.

Thanks
01-02-2018, 11:01 AM   #2
ronroush7
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Hi. I have been on azathiorpine for years. They have checked my blood regularly . At one point, they had to cut the dosage in half because there was too much in my blood. Ask your doctor but he may want to move you up to a biologic. Sending support and prayers.
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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.
01-02-2018, 12:17 PM   #3
Lisa
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Location: New York

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I was on 6MP for quite a few years with no noticeable side effects. Everyone is different, I did have routing bloodwork to monitor for issues.
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30 plus years and counting with UC/Crohn's!
on remicade since 11/05

While my experiences may not be what everyone has had- I feel it is worthwhile to share any and all experiences that may be beneficial to others.
01-07-2018, 05:39 PM   #4
Guerrero
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Join Date: May 2017

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I was on aza for almost 13 years, no side effects. After 11 years of remission, I developed strictures... so had surgery and switched to biologics.
Regular blood works are important and will detect most of the problems that could arise. No idea about tests to detect lymphoma in particular, good question to ask your doctor.
01-16-2018, 10:54 PM   #5
Sheri/caregiver
 
Join Date: Dec 2017
Hi
I have been on MEZAVANT and humira weekly injections which have not been completely working.
My new gastroenterologist has now put me on azathioprine 100mg .
My question is what are your experiences and opinions of aza and the side affects, is this just a lot of scaremongering as the benefits out way the side affects?
with regard to the side affects surely the blood test frequency would detects problems and then one can deal with them?
Would blood test detect Lymphoma or the other cancers, so one can act before it is to late?

Experience opinions greatly appreciated to put my mind at rest. i am in a corner at the moment going (running)to the toilet 25 times plus in a 24 hour period and heavy bleeding with pain etc.
Steroids caused cataract so no good.

Thanks
My husband was on Ana with Humira, prednisone & then Entyvio when Humira this was over a period of a year, he had severe trembling, joint pain and said his mind always felt like it was in a fog, and he had to fight to concentrate. His dose was started at 50mg then ramped up to 250 mg. They wanted him to get to 300 mg but he’d had enough and finally just stopped. It did nothing for the Crohns , neither did the Humira Entyvio and now on Stelara , prednisone & loop ilieostomy- everyone is different , good luck
01-17-2018, 10:35 PM   #6
toml99
 
Join Date: Apr 2011
Location: Georgia
I've been on it for 5 years, no side effects.
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01-25-2018, 01:21 PM   #7
Steph Childress
 
Join Date: Dec 2017
Location: Williamsburg, Virginia
I was recently put on this med. doctor wanted me start it before Humira. I could not function at all. I couldn’t think. It was like my brain was in a fog. I had to stop after only a week so I could take care of my kids.
01-25-2018, 01:52 PM   #8
Sheri/caregiver
 
Join Date: Dec 2017
Steph,
The same happen to my husband it was awful as they started him on Azathrioprine @ 150 mg and had him work up to 250 mg and wanted him to get to 300mg, that drug is a favorite anti inflammatory for some Doc’s as it can work well, but the quality of day to day living can be compromised . My husband finally decided he’d had enough and stopped it all together , my encouragement is to do what works best for yourself , it’s okay to say no. Otherwise you can weather it on and deal with the side effects, or ask about other anti inflammatory , Uceris was a better one with less side effects then prednisone , wish you the best. My husband is now facing total colon removal, Humira, Entyvio, Stelara has not worked. Best to you- Sheri
01-26-2018, 08:30 AM   #9
CallieS
 
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Join Date: Nov 2017
Location: Florida
If you haven't already been tested for TPMT, I would recommend it. My doctor was thinking about putting me on this medication, but had me get blood work done to test for TPMT first. My results came back indicating that I wouldn't be able to process this medicine properly, so he recommended a biologic instead. Here are some links describing this:

https://www.ncbi.nlm.nih.gov/pubmed/17654066
https://www.ncbi.nlm.nih.gov/pubmed/19129430

This article is much longer and more detailed:

https://www.ncbi.nlm.nih.gov/books/NBK100661/
Today, 03:57 PM   #10
Lynda Lynda
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Location: Arizona

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My first 3 weeks of 6mp went well
[ 100mg each morning. ] The 4th week bad brain fog. Brain fog went away the 5th week. I now have been taking the 6mp for 5 weeks. I already suffer from anxiety and take medication for it, but recently I am just a lunatic on the phone everytime I talk to the Leasing Office, my sister or even my Humira Nurse Ambassador. Could the 6mp cause me to be so much more nervous, or is it just the fact that I was newly diagnosed with Crohn's in April. Side note: Just started Humira injections a week ago.
Gonna rest now.
Today, 04:36 PM   #11
December's flower
 
Join Date: Mar 2018
200mg of azathioprine daily the last 19 months.The dose was gradually elevated from 100mg to 200mg.
I just love it. Gave me hope and my life back.
I will not leave it unless Aza leaves me first.
About the lymphoma concerns. At first I was worried, I cried I even tossed the first box in the garbage.
Was to afraid to take the minimal risk. I discussed with 5 different doctors and all suggested me to take it.
Indeed my hi told me that the odds of me becoming a billionaire by winning the lottery are much higher from getting lymphoma from Aza.
So relax and I wish you to get soon in a long deep remission
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