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Vasculitis UK
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My mother just diagnosed GPA, help needed

Dear patients and specialists,

I am currently working and living in the UK and my mother has been diagnosed as GPA vacuities on November in China. Furthermore, she also has kidney failure into some extent. Her creatinine was up to 500mmol/L when she was taken to the hospital. The renopuncture results shows her kidney has 50% failure. After one month treatment including 4 times hemodialysis and 2 times blood replacement and medicine (prednisolone 40mg per day plus cyclophosphamide 40mg per two weeks). She looks getting better and the creatinine is dropped to 212mmol/L at the moment.

Her early symptoms were ears infection and bleeding nose for about two years. She has been diagnosed until she lost the appetite and ached muscles. She vomited and the renal test shows her creatinine was far over the standard.

Could I please ask whether the treatment is effective? How much amount of cyclophosphamide to be needed to put the vacuities into Remission? Once the vacuities into remission, do we need to change to azathioprine?

Thank you very much.

Regards,

Iris

11 Replies
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I have GPA. I was diagnosed 4 years ago. My initial treatment was 6 cyclophosphamide infusions and I started on 60mg of prednisolone. I was then put on azathioprine (oral immunosuppressant). I have been in medical remission for 3.5 years.

I am off prednisolone (11 months, now) and I am reducing azathioprine.

I didn't have kidney involvement, I had skin, joints, abdomen, nose and lung involvement. Close monitoring is needed. I have monthly bloods and I see my doctor 3 times a year ( I was seen monthly first and then every 10 weeks).

Good luck to your mum!

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Thank you so much for sharing your experience. Did you feel tired when you took cyclophosphamide?

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I had extreme fatigue when I was on cyclophosphamide. Fatigue is a symptom of the illness as well and one of those that remind us to slow down and let our body heal.

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Thank you. My mother feels tired and muscle weakness. I insist that she should still do some exercise. I hope this is right.

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Hi Iris311, I have MPA vasculitis with kidney involvement. If the biopsy has shown 50% kidney damage then that's not too bad. There should hopefully be some improvement in kidney function as your mother goes into remission. I was told it does depends on the proportion of the damage that is chronic (dead tissue, won't repair) and that which is acute (will repair). It is usually up to 10 pulses of cyclophosphamide but that will depend on how quickly your mother goes into remission. Mine took the full 10 cycles. After that you start to take a milder immunosuppressing drug such as Azathioprine to maintain you in remission. This treatment regime is generally very effective in most cases but sometimes patients have to be put on an alternative drug Rituximab. I have been in remission since 2012 but I still take Mycophenolate. I hope this helps. Chris

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Thank you so much. This is very helpful. How could the doctor confirm the vasculitis is in remission? Is it depends on blood test results about Anca back to normal?

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It depends on a lot of things. Your blood test results, particularly creatinine and the rogue antibody ANCA. which is normally associated with GPA. Also how the patient is feeling. ANCA levels would be expected to reduce as treatment progresses but sometimes (as in my case) it doesn't go away altogether and you remain ANCA positive in remission.

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Thank you for the reply. It seems not a simple one plus one equal to two. An experienced doctor is important. Worried.

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Hello there, I have GPA and I started treatment with prednisolone and cyclophosphamide from February - June 2017 to get it under control. It has been difficult and the doctors are still working out what’s best to help me. Currently I’m taking prednisolone and having rituximab infusions and I’m hopeful next year will be easier.

I’ve found it really useful to keep moving, even when I’m feeling very tired and my joints are painful. I’ve been having physiotherapy most of this year which has been a great help: gently doing very specific exercises to get stronger. But they have emphasised how it’s important to be gentle, so some days I am very careful to rest more than I move. I wish your mother all the best for a speedy remission, but if it’s not so easy, not to give up hope.

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Thanks so much for the tips. I have asked my mother to keep moving. Her blood test results shows her PR3 dropped from greater than 200 to 87 mol now. It seems that the treatment starts working.

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Wow that’s quick! Mine is taking ages and ages to drop. I keep walking the dog and hoping for the best.

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