If vasculitis is remissioned, progression of... - Vasculitis UK

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If vasculitis is remissioned, progression of renal damage is stopped?

Wizzi profile image
10 Replies

Or the patient will reach inevitabitable throughout his life the terminal renal failure?

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Wizzi profile image
Wizzi
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10 Replies
Suzym2u profile image
Suzym2uModeratorVasculitis UK

I think we need more detail before we can reply

wegener88 profile image
wegener88

I was told that my kidneys will get worse even if my Vasculitis (WG) is in remission.

tiachibird profile image
tiachibird in reply to wegener88

Is this true, I wasnt aware of that?

wegener88 profile image
wegener88 in reply to tiachibird

My doctor told me that I have an autoimmune disease (WG) and kidney disease - Glomerulonephritis caused by WG. If WG is active than my kidneys will be destroyed faster, but if my WG is in remission it doesn't stop Glomerulonephritis.

I don't know if this is true but it makes sense to me, because I'm in a remission for three years and my kidneys are getting gradually worse. Also, even if you feel great and there are no signs of active Vasculitis you are still on restrictive kidney diet (protein and salt intake etc).

I hope that what I wrote is understandable. I don't live in UK and English is not my first language.

tiachibird profile image
tiachibird in reply to wegener88

Your English is very good. Thank you

Wizzi profile image
Wizzi

This morning, my son's doctor told me about the same thing. My son is twelve years old. His kidney's failure is at the second stage due to a systemic vasculitis which caused a rapidly progressive granerulonephritis. I wonder what will go on? My son got sick in March and maybe somebody has a longer experience to tell. Like Eraser I hope that my english is understandable... waiting your reply thanksssss

wegener88 profile image
wegener88 in reply to Wizzi

When I was diagnosed with Vasculitis (Wegener's granulomatosis) my creatinine was around 260 umol/L and they told me I have second stage kidney disease. Two months after I started with therapy (Corticosteroids and Cyclophosphamide) it dropped to 85 umol/L. Now (three years after initial diagnosis) it's around 105 umol/L.

Every patient is different but it's good to know that in most cases it takes years before it reaches the end stage kidney disease. I have talked to people who lived more than 20 years with WG and Glomerulonephritis without the need for hemodialysis or kidney transplant.

I think it depends on a number of factors including the eGFR and creatinine at diagnosis, whether the renal function improves during initial treatment, access to timely, expert care etc.

Those patients presenting with advanced renal failure will have much less reversibility than those with a slight amount of renal impairment.

What is really important is following the renal sick day rules and being aware of the effect of dehydration, infection and diet on renal function. A severe sepsis can wipe out remaining renal function very quickly. Also timely treatment of flares and definitive, remission inducing treatment at diagnosis.

MAC12 profile image
MAC12

I'm sure every case is different but 4 years ago I was diagnosed with GPA affecting (among other things) my kidney function which was only 28% and rapidly falling. Prompt and effective treatment put the GPA into remission and, over a period of 12 months, my kidney function returned to normal for a male of my age. It has since remained normal. So kidney function should not necessarily decline when GPA is in remission.

But, as I say, every case is different.

Wizzi profile image
Wizzi

thank you all very much. At first my son's kidney function which was only 20% and creatinine very high for a child. Now as I've said is at the second stage kidney disease. His vasculitis has affected most of all the kidnies. His doctor is very impressed about his recovery but also not clear about his kidneys survival in the time. Now I hope only that nothing else happen ...

have a good day

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