Just had a consultation with my rheumatologist today and he has changed his outline for me going forward that you may find interesting
I was diagnosed with GPA in 2017 and was quite severe at time of diagnosis.
Initially had cyclophosphamide infusions and have been maintained on azathioprine since,
Last rituximab was 2 yrs ago, been in remission for 2 yrs now.
I asked about his future thoughts on reducing my azathioprine, he said that there has been a lot of discussion recently across the international community on how best to manage GPA going forward.
It has been deemed that if your condition was and is mild then potentially weaning off immunosuppressed meds is a possibility but depending on how severe you were / are impacted then it is a much lower risk to keep you on immunosuppressed long term than to take you off them and risk a relapse as this has the potential of being severe
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I always have a distant hope that I’ll get off immune suppressants at some point but I know it’s not likely. Given the continued situation with covid I do sometimes wonder what they’re balancing risk of severity against. People seem to have respiratory illnesses all year round now.
Hi, I think medication management is very individual with vasculitis, and varies hugely because the illness is so different from person to person, also because the interest and knowledge of the doctors and consultants varies hugely. I’ve been on azathioprine for 14 years, even though I’ve asked repeatedly for a change, for example to have retuximab, but this hasn’t been agreed. I never had cyclophosphamide just very high doses of steroids when I was acutely ill. Recently I’ve managed to get to see a consultant with experience in vasculitis and was told they don’t like patients to be on azathioprine more than 8 years because of the side effects, although sometimes it is essential. And so now they are reducing my dose gradually. Hopefully I don’t have a flare. Good luck with your journey!
I was diagnosed 2019 and had 9 cycles of cyclophosphamide along with high dose steroids. I was put on 200mg azathioprine for 2 years with 1 shot of rituximab. Last year they upped the azathioprine to 300mg a day and twice they had to take me off it due to my liver reading and low white blood cells. They put me back on it the start of 2023, must be a case of third time lucky or not. If it does the same this time I will not continue taking the 300 mg. Has anyone else been on such a high dose and coped. I am on 5mg prednisolone and the rest. Around 100 kilos in weight. I was 143 kilos at my worst when I was on high dose steroids. The only good thing about the high dose was that it made me lose a lot of weight in a year but I would rather be fat than dead..
I'm on a low dose of both azathioprine and methotrexate for GPA. I don't have enough of the right enzyme for a higher dose of azathioprine and a higher dose of methotrexate affects my liver. My disease is very well controlled and no obvious side affects except a bit of fatigue when taking weekly methotrexate. I was diagnosed in 2008 and Ive been on methotrexate for most of this time. Hope you find a good balance.
my OH started to reduce his AZA in retrospect it was too soon but as we all know everyone is different and it’s a balancing act. He then had a flare and was given RTX and medication changed to MMF . All stable now but has made us more cautious.
I stopped azathioprine when I started rituximab. My last infusion of rituximab was six years ago. It was stopped because I was having so many chest infections and my immunoglobulin levels were very low. I haven’t had any immune suppressant since. I do however inject immunoglobulin weekly which is sometimes used for vasculitis. We are all different and react differently to the drugs that we’re given. Good luck
This is a very interesting post for me. I believe I have had a completely different experience than most people on this forum. First off, I'm curious about the title of this group being Vasculitis-UK. I was diagnosed in 2017 with Anca associated GPA which is one of 3 forms of Vasculitis. So I'm wondering if there are people on here that have Vasculitis but not from GPA. The next thing is that GPA is normally treated and managed by a Rheumatologist. In my case, I'm being treated and managed by a Nephrologist. My Neph went to medical school in the early 80s when Wegener's/GPA was a hot topic and he said he studied it because he found that it was one of the causes of kidney failure. So when I admitted myself to the hospital in 2017 with kidney failure, he was the one that diagnosed my GPA and determined a treatment plan. Mind you, I had a very severe case of GPA and in fact was told that the doctors at the hospital said they didn't think I was going to make it. He started me on 50 mg Azathioprine and 25 mg of Prednisone for the first 6 months. At that point, I had 4 infusions of Rituxan at one week intervals while continuing the other two oral drugs. Six months later, I had 4 more infusions of Rituxan. I stayed on the two oral drugs until Sept of 2019 which was a total of about two years. At this point, I was in remission and off all drugs for the GPA. Here's the kicker. I read a lot online about all of my conditions and I ask a lot of questions. I read that in the world of Rheumatology, they believe that GPA patients in remission should have Rituxan every 6 months as a maintenance dose to prevent flares. When I asked my Neph about that, he said "why would I want to give you a drug that is going to lower your immunity and expose you to infection when you don't need it?" Over time in talking with him, he admitted that Rheumys use it because they get kick backs from the drug companies for these expensive drugs. I see my Neph every 3 months with a full set of labs each time including urine specimen and at every 6 month interval, he tests my Anca level and I have been clean for 4 years now. He tells me that he has about 20 patients who's kidney issues were caused by GPA. I know everyone is different as has been pointed out in this thread several times but I shriek at some of the treatment regimens that have been described here. I just feel like people are being misdiagnosed and/or over treated. For the ones on here that have GPA and are being given maintenance drugs, is your Anca level be tested to see if it is active or not? I know none of us want to get or be sick but you need to be your own advocate and protect yourself from harmful drugs if you don't need them.
Hi. I was diagnosed with GPA in 2007 and had 9 cyclophos infusions before being put on steroids and azathioprine. I remained on 50mg aza for 10 years, even though I was declared in remission. 2 yrs ago I had a flare resulting in 2 rounds of Rituximab. I am now back on Aza (& steroids) for the foreseeable. It would be great to think I'll get off them someday, but I'm not holding my breath.
I’ve been on azathioprine for almost 4 years 150 mg a day and prednisolone on alternate days of 3 and 4 mg.
This is now a maintenance dose which I think will stay for some time according to the consultant, they did reduce the prednisolone to try to get me off it but things started to go downhill. It’s a case of good days and bad days now, so I just try to get on with life. When I was first diagnosed with MPA I had six cyclophosphamide infusions over a five month period plus heavy doses of prednisolone.
This is a great question to which there is no one easy answer! As others have mentioned, all GPA's are different and react differently to various treatments. However, I think you should be monitoring your ANCA, Pr3 and MPO in particular, if these two ANCA's are negative then you probably have a case for slowly exiting AZA over time. However, if your ANCA's are highly positive, or positive at all, then you still have key biomarkers for GPA and you should reconsider if it safe to exit AZA. The risk of relapse is generally considered to be much higher when ANCA is positive, compared to those who are ANCA negative. Do you know your ANCA now, and your ANCA history? I think this information can help you make your decision on which treatment is reasonable for you.
If your CRP and ESR are normal and your ANCA is 0 you have a strong argument to give exiting AZA a try. Accurately measuring ANCA can also be a consideration, but ANCA's in the range of 0-20 is pretty darn good and if your ANCA history was much, much higher then your treatment seems to have done its job. If you decide to exit AZA then try a very slow and safer approach over many months with multiple lab checks along the way at a say 3 month intervals. Drop a little more AZA over time only if your labs remain stable. AZA is a pretty safe treatment so there would be no hurry to exit. Keep checking your labs and be on the watch for the return of GPA symptoms all of which would be signs of a relapse. Good luck!
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