Welcome!

Welcome to the Wegener’s UK website

This site was originally intended to be a guide to Wegener’s Granulomatosis and the options available to those of us with the illness, and our families, in the UK. However, I have since discovered the Vasculitis UK Facebook page and Website, both of which contain more information and expertise than I’m likely to obtain for this site.

My name is Ryan, and I’m from Aberdare in South Wales. I was diagnosed with Wegener’s Granulomatosis over Xmas 2010, and am currently an outpatient at the Heath hospital in Cardiff. Due to damage caused by the disease while I was undiagnosed, I was waiting for a kidney transplant. Luckily, my family and friends volunteered to be tested, and in May 2013 my uncle donated his kidney.

My partner discovered that there are more of us out there than we realised, with over a dozen of us ‘Weggies’ in the local area. Because of this, she organised a meet up at a local hotel so that we could share our experiences and meet others in the same situation. We’ve since found out that Vasculitis UK are organising meetings around the country and regularly attend the South Wales meetings.

9 Responses to Welcome!

    Ron Bugler says:

    Hi Ryan,
    I have had Wegers for ten years in Australia and have had all the usual treatment without ongoing success until treatment with Mabthera or Rituximab. This drug is not on our government prescribed benefits list and we have to pay for it.It is very expensive. The American FDA approved use of Rituximab for treatment of Wegers on 19 April 2011. Does your health system provide this drug for use in your country?If so could you please provide a reference. I intend to present the facts to our government to obtain the drug for Wegers sufferers without cost.
    Your website looks great. Any assistance would be gratefully appreciated.
    kind regards Ron

    • Hi Ron Smilie: :)

      We can have Rituximab prescribed in the UK. I’ve had several infusions myself, and found it to be more effective than Cyclophosphamide, but with less severe side effects. I’m not sure where you’d get a reference for that though, so you’ll probably be better off asking the Vasculitis UK team. Their Facebook group is at:

      https://www.facebook.com/groups/16351007695/

    • Hi Ron,

      i just stumbled across this site while researching Rituximab. I got diagnosed in February 2011 and I only have limited in Sinus. I didn’t have to do Chemo as my Dr said it wasn’t needed. I have had relapse while I had been on Imuran so now I am on Methotrexate, Bactrim and Prednisone. My Dr. mentioned Rituximab to me but also mentioned the price and that hospitals don’t offer it unless it is a life and death situation. I can afford it so I was going to ask my Dr to give it to me. Are you able to give me more information on how well it worked for you?

      thanks :

      • Hi Mia, sorry about the slow reply.

        Rituximab worked quite well for me, but I had symptoms throughout my body. I had also completed a ten course dose of Cyclophosphamide before the Rituximab, so that would have already attacked the Wegener’s.

        I’ve just come out of hospital after a kidney transplant, so currently can’t pay as much attention to this site as I would like. I’m suggesting that everyone uses the Vasculitis UK resources, as they have a larger, more experienced team who can answer questions better than I can.Their main website is at http://www.vasculitis.org.uk/ or if you’re on Facebook, they have a page at https://www.facebook.com/groups/16351007695/

        Hope you’re feeling better soon, Ryan.

        • Hi Ryan,

          Thanks for your reply and I hope you feeling better too. I understand you not spending lots of time on these sites. Like i mentioned, I have limited Wegener’s only in sinus. I guess I can say I am one off the lucky ones. According to my specialist, I didn’t even need Cyclophosphamide. I am in Australia as well and am gutted that Rituximab is not government approved so I am trying to see what I can do – charity/ awareness to raise funds and also get government to realize that Wegener’s is not a joke and we need better meds.

          Get well soon. When you feel better and have time, please reply.

          Seema Smilie: :)

    g byard says:

    Hi, my dad had wagners for almost 20 years and was used as a bit of a guinee pig as they didnt know anyone who lived that long! Many times in the begining we were called to his bedside as he wasn’t supposed to live the night – but he was stubborn and always did!! He was only diagnosed by a student who happened to have read something about the disease and told her consultant, this probably saved his life. A lot of groundbreaking research has been done based on my dad, but at the time there was little or no information on the disease apart from the fact that it was terminal!! We were lucky that we had him as long as we did and he got to see most of his grand children grow up!
    Hope you have as much success with your web site and treatment – it is nice to know that there are ways of contacting other people with the disease now and they can help support one another.
    Regards
    Gillian

  1. Hi

    My ex husband was eventually diagnosed with it after 9 days on a life support machine 2 years ago after I keyed his symptoms into google 4 days prior! I presented my findings immediately and was told its unlikely to be that as it is very rare!!! However once they eventually confirmed it, they told me they had had a patient in the month before with it so not as rare as it would seem!!! After all his organs shutting down & 7 weeks in intensive care he lost everything! His home, his job and all of his will to live! He is now clinically depressed and receiving counselling who advised him to learn about the disease and has now found out that life expectancy is about 10 years once contracted! This has now severely depressed him to the point were he stopped taking his medication as a way out! He is being told that he should be working and risk losing his benefits, he needs advice, why is it not seen as a practically disablement and that he should be getting disabled living allowance? What should he be doing? I will point him in the direction of this website and hope you can help, I might be his ex but the mother of his children and for both his and the kids benefit, need him to stay strong and fight! Many thanks

    • Hi Diane.

      Apologies for the slow reply, but I’ve just come out of hospital after a kidney transplant.

      I’m sorry to hear about your ex-husband, and the poor information he seems to have received. Certain websites give Wegener’s patients a life expectancy, but from my experience, this is only appropriate when the disease is either undiagnosed, or is going untreated. I certainly haven’t been given any sort of life expectancy, and have just had a new kidney, which the doctors expect to last for at least a decade, or more, and that will then be replaced, giving me at least that amount of time again, sparing any complications.

      My best advice for you at the moment would be to get in touch with Vasculitis UK and speak to John and Susan Mills. They are much more knowledgeable on the subject than I am, and should be able to help a lot more than I can. Their main website is at http://www.vasculitis.org.uk/ or if you’re on Facebook, they have a page at https://www.facebook.com/groups/16351007695/

      Good luck, and I hope your ex is feeling better soon.

      Ryan.

    • Hi Diane, Well done for suggesting the diagnosis to your ex-husbands Drs. He owes you.!! Try telling him that I’ve had Wegeners for most of my life but was only diagnosed age 40. I’m still alive age 55 yrs although admittedly with some restrictions. He definitely should be able to claim DLA and needs to appeal if they say not…also it should qualify as a critical illness on insurance policies. Finally get him to research WG specialists online. I credit mine with keeping me alive and well all these years AND he mustn’t believe everything he reads on the internet..
      Good for you girl, I admire you.

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