Study suggests Azathioprine may increase risk of relapse in some AAV patients.

[Slem2]

Has anyone else read this study that says 1 in 10 AAV patients are hypersensitive to Azathioprine, which manifests as whole body inflammation, joint pain, and general feeling of malaise, which may increase the risk of relapse. I came off Azathioprine because it was wiping out my white blood cells and I relapsed twice while on it. Since going on Retuximab 2 years ago, I have gone from ANCA positive to ANCA negative and haven't relapsed since (fingers crossed). But this study is pretty scary for a drug that's used for maintenance therapy in a lot of AAV patients, especially when 4 of the patients in the study suffered acute kidney damage (which I have). I guess I'll never know if Azathioprene contributed to my relapses or my kidney damage.

[jgold]

What is this study?

Can you provide an internet link to it please?

[Slem2 in reply to jgold]

ancavasculitisnews.com/2018...

[Slem2]

ancavasculitisnews.com/2018...

[jgold in reply to Slem2]

Thanks.

Having now read the article and assuming the research conclusions are correct, the points I draw from it are -

a) 9 out of 10 patients on azathioprine as maintenance therapy for vasculitis do NOT suffer hypersensitive side effects.

b) Of the 1 in 10 who do, "In most cases, the symptoms resolved within a week of treatment discontinuation."

So the key thing is for the prescribing consultant to be aware of the side effects issue and keep the patient under review accordingly.

This is certainly what happened in my case. When he started me on azathioprine my consultant saw me in clinic every two weeks initially, then gradually reducing to monthly and three-monthly once it was clear that I suffered no significant side effects. On each visit he asked me specifically whether I had experience any of a whole list of effects, and this remains the first question whenever I now attend his clinic almost four years later - even although I (like you) am now on rituxmab instead of azathioprine.

Reading about your difficult experience makes me wonder if you have suffered - like so many contributors to this website - from being treated by doctors whose understanding of vasculitis is not as good as we would wish.

[Slem2 in reply to jgold]

You are correct in your reading of this study in that for most people the symptoms resolved after discontinuing Azathioprine. However, the symptoms described may not always be recognized as problems with the drug, since these symptoms can also suggest that a patient is relapsing, especially if tests indicate inflammation. I was never ANCA negative while on Azathioprine, and it continued to affect my white blood cells, even on a low dose. I do have good doctors, in fact the one who diagnosed me in 2014 and who I still see, worked with the person who discovered ANCA, and if it wasn't for him recognizing my symptoms and getting the right tests, I wouldn't be here today. What I took from this study is that Azathioprine may increase the risk of relapse, which I did twice and cost me my kidneys, and now I have to wonder whether Azathioprine contributed to that. I'm just glad I'm on Retuximab now.

[jgold in reply to Slem2]

Thanks for this and I take your point.

However if the symptoms arise then they presumably mean either -

i) the azathioprine is not working, or

ii) the azathioprine is causing them.

In either case, is not the remedy the same - stop the azathioprine and try something else?

I'd better stop there as I'd be in danger of straying into areas of clinical expertise, of which I have none.

[Chris-Bromsgrove]

Hi Slem2, I was one of those 1 in 10 who don't get on with Azathioprine. After finishing my last pulse of cyclo and feeling quite well, I started on Aza and felt dreadful (it did feel like I was relapsing). I continued with it for two weeks and after speaking to my consultant I was taken off it and put on Mycophenolate. Despite its potential side effects Azathioprine seems to be the preferred maintenance drugs for AAV. Chris

[Slem2 in reply to Chris-Bromsgrove]

Yes, Azathioprine does seem to be the preferred maintenance drug, which is why 10% adverse reaction to it is alarming, especially if the reactions can look like relapse, or actually attribute to relapse. Since this is only one study with less than 300 participants, I have to wonder if the prevalence of these issues is higher than the study shows.

[Christophene47]

I am not surprised to hear that. I was prescribed Azanthopine as a steroid sparing drug. The first dose told me that this drug was not for me; I felt sick and nauseous and within 45 minutes vomited it out. I never took it again. I mentioned it to a vasculitis specialist at Johns Hopkins in Baltimore, MD. She told me NEVER take it again and to list it as an allergy on any future paperwork. I was then prescribed Methotrexate and tolerated it better, but another rheumatologist and a hematologist (unrelated) were not in favor, telling me that it too causes cancer. So I stopped it on my own; I felt much better without it.

I have been in this morass for 27 months; I am praying that it is nearing its end. I am only using 4 mg. Prednisone and feel more normal than I have in a long time. For me, at least.stopping it was the best thing I did. The fact that so few doctors who know about various forms of vasculitis is scary and I think it best to use this site and I truly believe we are our own best doctors.

Wishing you a very Happy, Healthier New. Year!

We have to listen to our own bodies.

[Slem2 in reply to Christophene47]

Unfortunately, there are not many drugs that can ensure remission from vasculitis, and the ones there are carry risks and side effects. I would not have survived with just prednisone. Retuximab is the only drug that achieved real remission for me, but that too is risky. But the thought that Azathioprine might have contributed to my relapses when it was supposed to prevent it is disturbing.

[Christophene47]

I am so happy that Rituxambid worked for you. I imagine you received it IV? How many cycles did it take before you felt well.?? Are you now on dialysis?

There is no one magic bullet for all of us, unfortunately. You are lucky to have such a fine consultant. Best for the New Year..🎉🎉

[Slem2 in reply to Christophene47]

I receive IV infusions of Retuximab every 6 months. After 2 serious relapses on Azathioprine, I'm scared to come off Retuximab. The last relapse before i started Retuximab hit my kidneys badly and I'm now on dialysis, which, thankfully I can do at home overnight. Because Retuximab has been so successful for me, I can't help wondering if I would still have functioning kidneys if I'd had it after my first relapse. I've never had any adverse reactions to Retuximab, and it's the only med that has turned me from ANCA positive to ANCA negative, and have remained negative to date. I do need to get monthly IVIG infusions because my IGG levels are too low. Retuximab is known to cause this.

[Iris311]

The doctor suggested my mother who has GPA to do a TPMP test before switch to AZA.