Hi my husband is on dialysis after suffering from chronic renal failure in 2011. In2005 he had a kidney biopsy and as a day patient was

Treated for vasculitis then had a one off follow up appointment in 2005 saying he had been treated and needed no further treatment. He then had a heart attack in 2008 and was ill again in 2010/11 when he went to a n e with another suspected heart attack he was diagnosed with chronic renal failure. a few weeks later he was told his kidneys were working at 4% and he started dialysis immediately.

From reading about vasculitis I feel that somewhere between 2005 and 2011 shouldn't it have been checked?

What are others experience please? And the exact form of vasculitis has never been mentioned it has just been called vasculitis.

14 Replies

  • Hi Ironingqueen,

    One of the big problems with vasculitis is getting a diagnosis quickly enough before it starts to do too much damage. It seems your husband got a diagnosis but not the right treatment. Kidneys are one of the organs which are commonly effected but patients normally present with a host of other symptoms. The range of symptoms help to identify the type of vasculitis a patient has and the type of treatment they are going to need. Was your husband told what type of vasculitis he has and did he have other symptoms?

    Generally the initial treatment for most types of vasculitis is broadly the same. It involves a large tapering dose of prednisolone (steroids) and cyclophosphamide. What sort of initial treatment and medication did he have? There is no cure for vasculitis and the initial treatment is to put the disease into remission. You are then prescribed maintenance drugs to keep it in remission. This is usually a low dose of steroid and a milder immunosuppressant. Was your husband given any maintenance drugs?

    Finally patients should receive regular checkups to see that everything is OK. As I said earlier this disease does not go away and needs to be monitored. It is very important that the renal consultant treating your husband has specialist knowledge on vasculitis as well.

    There are many people on this group who have many years of experience with vasculitis who are able to offer further advice and supporrt. I hope your husband starts to get the specialist treatment he deserves.


  • Thanks for your reply Chris. His original symptoms that he presented in 2004 to the GP was headaches swollen legs with rashes and itching and lethargy. When he had his blood pressure taken it was sky high about 189/140. The GP randomly guessed at vasculitis and he was sent for a kidney biopsy and then treated for the vasculitis as a day patient. He was never told the specific strain but was told it had been treated and there has never been a follow up despite being under the GP for ever more for high blood pressure and then the heart attacks and then kidney failure.

    It was only when they were going to start his dialysis that it was said by the consultant that his kidney function had been destroyed by his vasculitis.

    It was only when I found this site that I have read about continuing treatment.

    Has treatment become more complex since 2005?

    It was a renal consultant at Leeds General Infirmary who treated him in 2005.

    Thank you.

  • And also, if you don't mind me adding, does that mean he will still have vasculitis as I am putting forward to donate my kidney to him or in a two way swop but they haven't decided if he is fit enough for the op heart wise but they haven't mentioned vasculitis again since 2011. Thank you.

  • I have had

    Vas cultus ( Takayasus ) for 50 years, and still go for check ups. There is no cure and it can flare up at anytime, causing other problems . Mines gas caused me a few other problems , that I still have . Good luck X

  • I'm rather appalled to hear your husband hasn't been treated appropriately and feel this may well verge on medical neglect. Any renal consultant should know that vasculitis is an incurable disease which requires regular monitoring and potentially, permanent treatment to maintain remission. As an example, I've had vasculitis since 2006 and had extensive treatment to bring it under control for almost 18 months. Fortunately my kidneys weren't affected but I still have my renal function and a full blood screening done every 2-3 months. With 6 monthly consultations with a very capable vasculitis specialist.

    Whilst knowledge of the disease has improved and treatment regimes progressed over the last 10-15 years, it was certainly well enough understood to be effectively managed. It's important to know what type of vasculitis your husband has as treatment can vary for the different types and a biopsy should have revealed this although in some rare cases the actual classification isn't possible.

    The first thing I would do in your circumstances is find a consultant who knows what he's doing and I suggest you contact the V-UK regional co-ordinator for your area (Yorkshire North/West Lynne Jacques 01274 412378 lynne.jacques@sky.com) and ask if she can assist with a recommendation. Alternately contact the Vasculitis Clinic at Addenbrookes (01223 586 796) directly and ask to see Dr David Jayne who heads the team. He's one, if not the, most knowledgeable consultant in the field and will act either directly or as a consultant's consultant.

    I'm sorry if this sounds rather alarmist but please do not assume that your 'doctor knows best' in this case as clearly your husband is in need of proper and appropriate treatment.

    Healthy wishes.

  • I think your husband as had a raw deal he needs to go and see is gp and get answers like martyn said medical neglect comes to mind you have rights go asap

  • Thank you Rosie, Martin and Cedric for your replies. I really appreciate it.

    And thank you Martin for the phone numbers I will start to try and unravel what has been missing all these years as I would have thought we need to sort things before he can have a transplant.

    All these years he has been ill intermittently and we have never thought it was vasculitis symptoms. We've tried cutting different foods out thinking he had gout for example.

    I do feel rather over whelmed and quite shocked to hear your opinions thank you for taking the time to reply.

  • I'm sorry I don't have an answer for you, but I am interested in what others are going to say. My husband was diagnosed September 2013 and when I have asked this question with his hospital Dr, are you going to do an MRI or how will you know if it is flaring up, I get the answer that unless he is feeling unwell they will never know as doing an MRI will not give them the answer, its all too vague....

  • Hi Simmonds 797 - sorry to hear that you sound as though you are in a similar boat to us. I wondered what area you are in?

  • I had an mri scan when I was diagnosed as I had lumps behind my eyes which showed up on mri scan Ihave had 2 further mri scans and about 4 ct s scans plus x rays as different symptoms have flared . Blood tests and urine also regularly As changes can be seen in the bloods/. Push for more answers it is not an illness to mess with GOOD LUCK

  • Thank you for your time too Kath.

  • There are several scans that can be done, but I was told that a PET scan gave the most information. On mine, the areas of active inflammation were very clear. Ultra sound scans showed up the blockages in my sub-clavian arteries, and they are redone once a year. After a CT scan for my (minor) heart problem, the cardiologist told me that she could see the problem in my aorta quite clearly...she was very interested! So, there are several types of scan that can be used, and you need to push for someone to have proper look. Hope you get something really constructive.

  • Thanks Bronte. We are going to write to his consultant and will request that it's time to get to the bottom of this. And if a PET scan isn't forthcoming we will push for it. Appreciate your time thanks.

  • Dear ironingqueen20(so called because you are good at washing up, no doubt?),

    I have read, admittedly rather quickly, the other replies that have been posted. I feel that I might be of some help, as my 'case' sounds similar to that of your husband. Can I first of all say please, please give your 'hubby' my very best wishes.

    I was diagnosed 'out of the blue', as it were, seventeen years ago- basically I just collapsed in Central London. Apparently I was found, taken to University College Hospital and ended up in the 'short stay'/ accident & emergency ward. Amazingly, and very luckily for me, a passing consultant recognised, or rather suspected, that I had vasculitis. I had suffered considerable brain damage, along with both heart and kidney damage. I was also given an hour to live- extended to a week, then a few months.....That was seventeen years ago. I was on dialysis, for four years, before a kidney transplant- nearly a year ago now. I won't bore you with the 'nitty gritty', as it were, but I was put on/still am on on several different medications- which have changed a little (but not a great deal) since the transplant.

    Once again please give hubby my 'best' and sorry about the pun on your name- I just couldn't resist it! If you feel that I can be of any further assistance, please do feel free to ask.

    Very best wishes AndrewT

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