Hi
I was given EGPA (Churg Hauss) as a likely diagnosis in December. I am on 20 mg predislone, now had one month on Azathioprine, but first week ok, second week nausea, third week reasonable, fourth week really bad stomach ache and vomiting - any one out there had similar experience. I have stopped Azathioprine temporarily, but feel I should give it another go ?
I lived with daily nausea and sometimes vomiting from Azathioprine for 8 years from 1998 onwards, up to 8 hours every single day. I told the medics, but figured (rightly as it turned out) that all the immunosuppression drugs would make me hurl. I've tried virtually all of them since, and get sickness from the lot. And I knew that I needed Azathioprine to stay alive with my form of vasculitis. I used to try to sleep through the worst of the sickness. But it never went away. I'd try very hard not to vomit, because once I started it was very hard to stop. My cerebral vasculitis also causes vomiting, and can get very bad.
But I wasn't given any help with the sickness, until I added Mycophenolate Mofetil, which also made me hurl. I said I can't go on with this. Then the medics prescribed me twice daily anti nausea pill Metoclopramide. It transformed my life.
You need to talk to your medics urgently. Stopping Azathioprine will stop the side effects, but won't control your disease enough. You need to find a good way forward. Often the sickness will subside over time. But many patients find that switching to another drug instead is a better solution. And some, like me, find anti nausea pills prescribed permanently make things manageable.
Good luck!
Use medical marijuana instead. It is very effective for controlling the vasculitis (kills the B cells that vasculitis uses to attack your blood vessels). My friend could not take the traditional immunosuppressants and switched to medical marijuana which is legal here. She takes 30 to 40 mg of CBD (the non hallucinatory part) per day and 10 mg of THC (the hallucinatory kind that makes you drowsy--Indica) at night. Both are necessary to attack B cells with different functions that can attack you. This is the same approach that Rituxan treatment uses to treat vasculitis, though Marijuana also impedes t cells that seem to be a culprit in vasculitis, also. It is a god send, and you are not sick from the medication all the time. It is a great drug and a great treatment.
Hi,
There is a test that should be performed before you are prescribed Azathioprine. You have to produce a certain enzyme to be able to metabolise the drug. I do not have the enzyme so I could not take the drug as it would make me sick. I do to have access to my records so I cannot tell you the name of the enzyme but some else might be able to. I suggest you try and talk to you consultant. Good luck.
I was given Azathioprine many years ago but still remember the acute sickness that accompanied the drug. I took it for 7 days determined to give it a real go. During that week, I could not leave the house and literally walked around carrying a washing up bowl as every movement triggered a gift ... I wasn’t aware of the enzyme Jann mentioned. Unfortunately as it turned out several drugs later eg Leflunomide, Methotrxate etc not one can my body tolerate. Hence 9 years later still on Prednisolone and according to my Rheumatologist this is it for life. Still I am grateful for living in a time where we have hope.
Love and blessings.
Margaret x
Hi I've been on azathioprine a couple of months now I'm ok but steroids are the ones which can give you adverse reactions maybe just start azathioprine slowly and build up to full dose I don't take steroid at same time I'm off them now best of luck
Thanks to you all for the comments. I will give Azathioprine one last try - I did have the test for the enzyme and was ok with it, but I understand despite that it can still make you very sick. I hope I can tolerate one of the others if that does not work - and there are these new ones like Ritixunab. I had wondered if the combination of steriods and immunosuppressants is just too much for some of us. Thanks - it is so good to know there are others out there with the same problems, because you just don't meet many people day to day with vasculitis!
See above. Use marijuana (see above). It works as well or better, and none of the pain.
Hi Greytippy7, I have EGPA, diagnosed a little more than 2 years ago. Currently I have 10mg Prednisone, 100mg Azathioprine , and 5 rounds of Rituximab so far. This is about the lowest dosages I've gone to over 2 years. I've managed without incurring nausea (yay!), but I found that I must take the Aza with a meal or it will make me ill. I also broke up the 100mg to 2 doses in a day. It was recommended by my doc and the label on the bottle. So far my liver appears to be dealing with it all. Next round of labs is next week- so we'll see.
If you are going to try the Aza again, maybe try to take it with a meal, separate the dose in the day...assuming you hadn't already tried this. Good Luck!
Hello Grindhaus - thanks. I have just read some of your other posts and sounds like you have had a rough few years. So far my EGPA has just affected the lungs - they thought it was pneumonia but when they found ANCA in the blood the diagnosis changed. Now I think it is affecting my nose, but doctors wont take me seriously on that, need to see a proper rheumatologist. Predislone has done a wonderful job so far but I need to move to next stage. My employers have been brilliant, I am working nearly full time again but struggle some days. I will give Aza another try with careful eating regime, really want it to succeed and get off the steroids. Thanks.
Stopping Azathioprine
Starting Azathioprine
Azathioprine, and nausea 
tapering off azathioprine 
