Has anybody, who is ANCA negative, tried aza... - Vasculitis UK
Has anybody, who is ANCA negative, tried azathioprine? How did you fare after taking this drug?
I have Churg Strauss Syndrome, diagnosed 8 months ago, and tested as ANCA negative. I have been on azaathioprine for the past 4 months, having been switched to it after initial 4 months on Mycophenolate (CellCept). I was switched to it after getting a chest infection/pneumonia whilst on that immuno-suppressant.
However I have since had two more chest infections, with hospital stays, since being on the newer drug. But the infections are a result of suppressed immune system so it is too soon to know if this IS will work better. Currently on 100mg dose as well as steroid at 15 mg.
Only side effect I experienced was on the first day I restarted it, after it being stopped whilst in hospital, was being violently sick. But only happened once. Otherwise no nausea problems, but many others report nausea as an issue.
Why are you asking this question ... please clarify?
JontyW
Yes I have cerebral vasculitis, which is an ANCA-negative form of vasculitis. I have been ill since 1994, and was finally diagnosed in late 1997.
I was initially put on Azathioprine in 1998 after Cyclophosphamide was ruled out for fertility concerns. It achieved a sort of remission for me, and helped me get my pred down to 2.5mg alt days.
Sadly my disease relapsed in 2004, and I've had to add more and more drugs since then. But Azathioprine was good for me early on.
On the downside it did cause quite significant side effects, particularly nausea, which at the worst lasted for up to 8 hours every day. I told the doctors, but I don't think they appreciated how bad it was. I hung on in there, because I suspected other immunosuppression drugs would make me nauseous too (turned out I was right). Years later I was offered permanent anti-nausea pills. If only I'd had them sooner. It also caused long-term hair thinning, which in some ways was worse than what I had later when I finally tried Cyclophosphamide. But these side effects were worth it for me, for the benefits they gave. I think I was unusual to get such prolonged severe nausea.
I was offered Aza' initially but my liver could not metabolise it. My liver results were off the scale toxic. My GP rang me and told me to stop taking it immediately. I was then put on Mycophenolate, until it stopped working....etc...etc.
Apparently I do not have the enzyme in my liver which metabolises this drug.
I later learned that there is a test that can be given to prospective Aza' patients to determine if you have this enzyme.
Hope this helps!
Many thanks to all the replies. They are really helpful to me.
My mum has ANCA negative leukocytoclastic vasculities, affecting her kidneys. She has finished one course of prednisolone of 30 mg and doctors then prescribed dapsone to her. Both drugs gave her side effects but dapsone was worse as it led to increased pulse rate, diarrhea and vomiting and worsening of her kidney function. She is now hospitalized and doctors are thinking of asking her to try a low dosage of prednisolone with azathioprine. I looked up this site about azathioprine and it seems like most people who have tried have WG which is an ANCA positive form of vasculitis. I am glad to have heard from those who have ANCA negative vascultiis like my mum though I appreciate everybody's condition is different and may respond differently to different drugs. I am rather apprehensive of her trying another drug as she has so far responded unfavourably to all the drugs she had tried but I know the doctors are doing this in order to prevent her kidneys from deteriorating further. Her creatinine level was 407 upon admission. Anyway, I shall wait to hear more from her doctors. Thanks again.
I have WG but have always been ANCA negative! After seven infusions of cyclophosphamide, i was put on Azathioprine, but my liver didn't tolerate it. I'm now on Rituximab, which seems to be doing ok.
Thanks, Suffolkgirl. What you mentioned is something new to me! Your comment is very helpful and I will speak further with the doctor.
I have been taking Azathioprine and have never had any issues with it. I have been relatively stable on it and have been able to reduce my steroids right down. I have 3 monthly blood tests and I have been luckier than the other people who have replied to you, I have no side effects or problems with my blood tests. All you can do is to try it out. Good luck. Sue
Thanks, Susie.
