Hello all

I was diagnosed with ANCA Vasculitis and sensory motor neuropathy in February this year. I have had chemo therapy but had a reaction to cyclophosphomide so went onto mycophenolate. The vasculitis has damaged my kidneys and the nervous system in my right foot and neck. Fortunately no other organs were affected. I have to wear a splint to walk distance and for driving. Has anyone had any experience with this type of vasculitis and what damage incurred?


7 Replies

  • My mum has vasculitus that caused kidney damage leading to complete kidney failure. Luckily hers was reversible due to the lack of scaring but her kidney function remains less then it was. She has nerve damage to her hands and feet, I heard someone's else describe this as having hands and feet that don't fit as well as the old ones did. The analogy seems accurate in my mums case, lack of feeling is the main problem.

    Hope you go on well.

  • I think that having hands and feet that don't fit is a good description of the feeling. From what I have learned the nerves will never recover so the thing to do is work around it, it is not a pleasant condition but as they say "where there's a will there's a way." and carry on living.

    Tell her to keep a happy face on, it really does help.

    Good luck - Ken

  • Hi Ken

    I have AAV (WG/GWP) which was diagnosed 7 years ago following ENT/respiratory issues but have no kidney involvement. More recently, I've experienced what I thought was peripheral neuropathy in my hands and feet along with chronic headaches. Further to a nerve conduction study which showed nothing abnormal, an MRI scan has revealed multilevel lumbar disc disease and other ligament damage along with two stenosis which are impacting on the spinal cord. In my case, I suspect the high doses of steroids may well have caused the majority of my problems but am unclear whether the vasculitis has played any direct role.

    I'm curious as to whether the damage to your nervous system has been confirmed as being a direct result of vasculitis and if so, how was it discovered? Did you have nerve conduction tests, x-rays and scans?

    Healthy wishes.

  • Hi, in reply to your query about the nerve damage, it all started in my right foot with a numb feeling which spread upward on my right side and into my neck and arms, it was only when I couldn't walk without the aid of a 3 wheeled walking frame that I went to the doctors (Almost too late as this type of Vasculitis is terminal if not treated). I was immediately admitted to hospital where I was diagnosed with ANCA Vasculitis causing damage to my nervous system and kidneys. They put me on intravenous steroid drip and cyclophosphamide. I had nerve tests, CTC and MRI scans which confirmed their diagnosis. I would say that Vasculitis has played a major roll in your problems as this condition is no pussycat. You may find useful information on arthritisresearchuk.org

    Good luck - Ken

  • Hi Ken. I was diagnosed in Sept after four years of sensory peripheral nerve problems. My skin is also affected with livedo, ulcers etc, particularly on my legs. I'm three treatments into cyclophosphomide and all ok so far. I've currently pretty much lost all feeling in my feet and have ulnar nerve damage in my right hand so Ive lost my pinch grip and have muscle wasting. I've been warned that this may not recover.

    All of my other organs are fine at the moment - long may it remain so!


  • Hi Lynda. I think they may be right about the nerves not recovering, I have been told the same thing. I don't think any more symptoms will occur if they have the condition under control. I have found that a positive attitude and a will to get better helps a lot.

    Good luck - Ken

  • Dear Hidden,

    I don't know about your other symptoms-apart from what I have 'cleaned' over the years-but I suffered major kidney damage. The result of which is that I spent eleven years pre-dialysis, followed by four years on dialysis-three times a week. I was fortunate that I had a kidney Transplant, in July 2013, at Addenbrooke's Hospital, Cambridge. I too am now of Mycophenolate, having been on Azathioprine until the transplant. My other drugs have remained mostly unchanged-or have returned to much the same levels, over time.

    Which part of the country do you come from? (I asked this question, last year, and found that he lived in the USA!) Not that it really matters, perhaps I'm just 'nosey', but are you male or female and, if I can be so bold as to ask, how old are you? Ok questions over, it only remains for we to offer you a 'hearty welcome'-to our group. I can assure you that we don't bite-well not hard anyway, and only when the moon is full and Sagittarius is in Aries...No wait that's the recipe for chicken soup!

    Very best wishes AndrewT

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