Imuran Side Effects

[Mattieus]

I wanted to check in with my fellow GPA friends. I hope you all are well. My question pertains to those of you who have taken or are taking Imuran. I have recently been swapped over to Imuran by my Rhuematologist. We have tried Methotrexate, Leflunomide, and now Imuran. I am a bit less than 2 years post diagnosis. I recieve RTX x4 every six months, and they are using the various meds to help mitigate the RA symptoms I am presenting. Anyway, on to my question: how have your symptoms been on azothioprene? I have had a general ill feeling, fatigue and a "fog" I guess? It almost feels like I am about to come down with the worst flu. I cant really think straight? It is hard to explain. I am doing the step up dose. 1 pill per day for a week, then 2 a day for a week, 3 pills, 4 pills, so on. Up to 5 pills with blood tests each week.

So what has your experience been like? Any tips on reducing the side effects? Last night was my first 2 pill dose and I took it before bed, but I woke up and feel like absolute trash. Thanks for your input!

[Pete]

@Mattieus (https://www.wegeners-granulomatosis.com/forum/member.php?u=10024)

Did you get a TMPT test before starting immuran? This test checks to see if your liver can metabolize immuran. I didn’t get the test, and the drug made me very sick (GPA flare plus pneumonia). Also had hypotension (BP got down to 60/40 at one point) and my doc was amazed I was upright and lucid.

Hope you feel better soon!!

[Mattieus]

Pete, I did indeed have that test done about a week before. It came back totally fine so we started. It has just been really really rough so far. My doc told me what to expect, but man, this is unpleasant. Thanks for the well wishes! I am happy that you are ok after what happened with you.

-Mattieus

[Masha]

Hi Mattieus,
I can not take that drug. I was tested and OK’d for it too. Started with one, felt like you described. I increased to two, then contacted my doctor. I should have contacted her before I took two. She told me not to take two, but it was too late. The combination of the Aza and the prednisone shot my sugar up. My body started to shake. Shaking went on for four hours. My legs went weak and I could barely walk. My husband followed me around, which was a good thing, because I started to go down and my head could have hit the bathtub. I became aware of things after about ten minutes, when he was calling the ambulance. I stopped him, feeling the worst was over. I will not take that drug again. Yet, I have read others on this site taking it with no problem. Definitely, the medication we take for this disease varies from person to person.
Masha

[Keith]

Hi Mattieus,

I am up to 100 MG / day of Azathioprine / Imuran. It may be increased further if my doc and I decide to halt the RTX infusions. I've had the infusions for 2 years since DX. January would be next.

I digress ... it initially took me a couple of weeks to tolerate the AZA well. I was very nauseous and even lost my breakfast on Saturday out working in the yard. Dr advised me there were no better alternatives and try to stick it out. I reluctantly did so but it worked out. Weened off predinisone too for several months now. I hope this good run continues.

I am concerned about long term use of AZA increasing risk of bladder and skin cancer. I met a 94 year old man this weekend that lost his bladder to cancer in the 80's. He is getting along like a champ today. Inspiring.

Hoping the your body adjusts to the meds soon,

Keith

[Arleta]

I have taken Imuran for about 9 years with no big problems. How I feel each day varies. Sometimes I do have some of the issues that you list, but most of the time I do ok. It is a maintenance drug for me, but I feel like I am always on the verge of a flare (or at least symptoms coming back) if I overdo it at all. I do not do RTX infusions...my doctor has never suggested it. I know Imuran has bad possible side effects, but so far I am ok. I need to be on something.

Sent from my SM-T800 using Tapatalk

[drz]

I have taken Imuran for about 9 years with no big problems. How I feel each day varies. Sometimes I do have some of the issues that you list, but most of the time I do ok. It is a maintenance drug for me, but I feel like I am always on the verge of a flare (or at least symptoms coming back) if I overdo it at all. I do not do RTX infusions...my doctor has never suggested it. I know Imuran has bad possible side effects, but so far I am ok. I need to be on something.

Sent from my SM-T800 using Tapatalk

I started with a very low dose in 2011 and gradually worked up to my therapeutic level of 200 and then it was backed down to 175 due to elevated liver enzymes. My doctors are saving RTX to use again in case of a very serious flare (I had a trial in 2010 when diagnosed but had to switch to CTX since RTX takes too long to work) although this year we have started to consider RTX when my residual symptoms increased and didn't seen to stay gone after I tried a few pred boosters. My maintenance dosage has been 5 mg but some times it is doubled or tripled to control some troublesome symptoms like nose bleeds and joint pain and use fatigue stuff. Right now I trying again to get from 7 1/2 back to 5 mg daily.

Bladder cancer is considered the worst side effect of CTX. I am not sure what the most common side effects are of long term use of AZA (Imuran) and no one knows about RTX side effects either for long term usage. We do know the result of no or inadequate treatment for GPA so we opt for the meds.

[Mattieus]

So update time I guess? It has been a really active week or so. Basically I kept my trend of feeling like crap. On Thurday Sep 26th, I started to feel disoriented in the evening after my dose. I would take Imuran at night to help sleep through any initial side effects. I got up to go to work Friday with a bit of a weird feeling, but nothing unusual. I worked the whole day and was generally fine. Saturday and Sunday I felt as though I was getting a stronger feeling of nausea and malaise. Sunday evening rolled around and I had slept most of Sunday, and hadn't eaten since Friday midday. I was feeling very ill. Dizziness, nausea, fatigue, horrible headache and mild chills. Monday rolled around, I went into work (Sept 30th) and had to leave early. I went home, called my Rheum and noticed I had developed small red pustules all over my body. Almost like folliculitis but it was on the palms of my hands as well. Overnight Mon/Tues I woke up shivering, sweating under 6 blankets. I stood up, was extremely dizzy and crawled to the bathroom, took my temp, it was 102.8. My wife took me to the ER. They gave me 2.5l of fluid, and gave me 3 different IV antibiotics, then did a ton of tests and found that I had a large amount of WBC and blood in my urine. Additionally my WBC count in my blood was very very high. They did blood and urine cultures, nothing grew. I saw my rhuem and he told me to discontinue the imuran for now, and keep my antibiotic (cefdinir) going from the ER doc. The ER says its a kidney infection, but I have had no other symptoms of that. Who knows at this point.

Luckily today I am feeling more human, can function a bit more today and the spots/rash is going away. My Rheum and GP are at an absolute loss as to what is going on. :confused1:

[Masha]

Mattieus,
Sorry you went through all of that. Just glad you made it to hospital and getting back to normal.
I am learning that drug treatment, just like this disease varies from person to person. We can only find what works for us and stay the course. As I said in a previous post, prednisone and Aza caused my blood sugar to rise which resulted in the shaking and shivering. I handle my Rituxan infusions well, where I see others don’t go there.
Masha

[gilders]

With 4xRTX infusions every 6 months you may not need an extra maintenance drug?
But there is one you didn't mention that you'd tried, Mycophenolate. That may be an option.
I doubt they'll put you back on Aza, but I was on it for the majority of about 20years. Dr's believed it was the cause of my immature, odd shaped red blood cells, which reverted to normal after I came of Aza. It also stopped being effective after 20 years. Overall I think it was a good drug for me for the first 19 years.

[drz]

With 4xRTX infusions every 6 months you may not need an extra maintenance drug?
But there is one you didn't mention that you'd tried, Mycophenolate. That may be an option.
I doubt they'll put you back on Aza, but I was on it for the majority of about 20years. Dr's believed it was the cause of my immature, odd shaped red blood cells, which reverted to normal after I came of Aza. It also stopped being effective after 20 years. Overall I think it was a good drug for me for the first 19 years.

I had the immature red blood cells from one drug I tried to take instead of Bactrim so I ended up getting Pentamadine nebulizer treatment every month instead. I have been on AZA almost nine years so who knows what side effects might turn up from it or any of the many drugs i take now but without all the various chemicals I figure i would be long gone years ago so I just enjoy the bonus years and hope they last a long time for me.

[tac]

Hi There,
This is very good info. I just finished my last of 4 RTX infusions today, still feeling really bad, went back up to 20 mg of pred from 12.5. Excessive sweating, brain fog, confusion, shortness of breathe, irregular pulse up and down, etc. Dr is talking about immuran, all of these side effects scare me! I am wondering what is working best for people along with the RTX?