Vasculitis UK

Chronic kidney failure


I would like to know if anybody has experienced a sharp decline in kidney failure, say 5% within 2 months and have to undergo RECORMON injections due to low blood count? My mum has end stage 3 CKD and experiencing swollen feet now. What treatment was prescribed to you and what was the outcome? I am seeing my mum's renal doctor next week and would like to get some advice, if possible. Many thanks!

7 Replies

Hi. I was diagnosed with chronic renal failure which progressed to stage 5 last year and I was using Recormon injections weekly., but my specialist at Addenbrookes hospital prefers Aranesp injection which I use just monthly instead of weekly now. I have Rituximab infusions very 6 months and I call it my ' wonder drug ' suddenly in the last 6 months my kidney function has dramatically improved and i'am no longer being tested for a transplant. Even Dr Jayne my consultant at Addenbrookes cannot give me an answer as to why it has improved and if it will last !! The kidney failure is not caused by my Vasculitis but a congenital problem, which resulting in me losing my right kidney many years ago. I also take diuretics to help with the swollen feet and ACE inhibitors to control the blood pressure. I have regular blood tests via my Gp or the hospital to monitor the kidney function. I also see the Dietician if my blood results necessitate that I need to alter my diet. I always write down any questions before I go to the hospital and I have joined the British kidney association for advice when needed. Does your mum has renal involvement due to Vasculitis ? And is she seeing a specialist ?

Wishing you Goodluck with your mum and keep us all posted. Jill x


Dear Cricket,

I have just had a kidney transplant after about three years on dialysis. My condition is uncategorised vasculitis, some five strains overlapping, and I was pre-dialysis for about ten years; a record in itself!

It is therefore quite difficult for me to comment on your case specifically, particularly as I know little, or nothing, about your mums background. I will say this; that if you send John a 'question' he will, I'm quite sure, do his best to answer your enquiry. John, and his wife Susan, the founders of this forum do really do there best to get answers to difficult questions; no I'm NOT on their payroll, by the way!!! I'm sure that if John reads this he will contact you direct.

I wish you, and your mum, my very best wishes and hope that 'everything' works out for you.

Kind regards



Thank you so much for the responses - this mean a lot to me at a time when I am feeling so helpless about my mum's situation. My mum is suffering from leukoclytoclasic Vascultis with renal damage. The Vasculitis is the cause of her kidney failure. The recent decline in her kidney function appears to be due to our unwise move of taking prednisolone and then not continuing with it. She has an on-going gastro discomfort problem which is taken care of by the medication Omeprazole.

Jill - Your account of how your kidney function improved has been very comforting to me when my mum's renal doctor made a comment that she shouldn't be afraid of kidney dialysis when it comes. A specialist rheumatologist I consulted for a second opinion said prednisolone is not strong enough for her current condition and he also recommended Rituximub injections. Apart from this, he said there is also another effective infusion but it is very expensive - costing a few thousand dollars. Like you, I have also brought my mum to see a dietitian and we are now taking care to avoid taking too much potassium in our diet.

Andrew - thank you for your advice. I have just sent a private message to John Millis. I am not sure what was your experience when you mentioned you had uncategorised vascuitis but I can imagine you must have gone through a trying period, seeking to find the cause of your vasculitis. For me, it has been a long process of seeing one doctor and then being referred to see another doctor who would recommend further tests...

Do take care and I send you my best wishes to your health.



HI Cricket, my Mum had acute renal failure caused by vasculitus, she was on dialysis for about five or six weeks while taking prednislone and cyclophosphmide, which she still is. Her kidney function slowly returned to the point where she now has normal kidney function. It all depends on the result of the kidney biopsy, if there is scaring then that is permanent damage. My Mum was lucky enough to be diagnosed quickly enough to avoid this thankfully.


Dear Luggsey, my mum had a kidney biopsy done one year ago and it showed her kidneys were free of scaring. May I ask what was your mum's eGFR before she commenced her treatment of prednisolone and cyclophosphamide, and her current eGFR?


Hi cricket, I never saw her gfr, I think because she was admited with almost complete kidney failure it was a mute point. Her creatine was I think over 600. With pred and Cyc she now has normal function, that's as much detail as I know sorry. If your Mums kidneys have no scaring that's a good thing at least. I hope it all works out for you both, I have my Mum home but unable to walk, she had a stroke as well with cv so its a long battle to get her well again, you are not alone.


Thanks Luggsey. If your mum now has normal kidney function, her eGFR should be above 40, I suppose and this is a good sign. I know how it feels being a care giver, so please do take care of yourself too. Do keep us posted on how your mum get on. God bless.


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