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Living with GPA Vasculitus

Posted , 5 users are following.

maddie26625
maddie26625

Hi. I was diagnosed with GPA (formally known as Wagner) just over a month ago. I'm in the middle of chemo treatment and appear to be responding well. I had anemia at too and had seven transfusions. My respitory system and kidneys are affected. I'm a secondary school teacher and have been off work for almost a term. I am hoping that I can return to work in two weeks.

I'm just wondering how other people with similar Vasculitus are coping.

0 likes, 14 replies

14 Replies

  • philtw
    philtw maddie26625

    Posted

    Hi,

    I had PAN when I was 21yrs and now have GPA since I was 51yrs, in the first instance PAN was little unknown (1980) and I spent 3 mths in Hospital however after I left hosiptal I had no further time off work and went into remsision and off all drugs after 5 yrs. With GPA I lead a normal life, with the odd day off for Rituximab.....in and out of relapse/remission.... controllable with increase of steroids.

    • maddie26625
      maddie26625 philtw

      Posted

      Thanks for sharing. I hope I get this into remission soon.
  • jay1jay
    jay1jay maddie26625

    Posted

    Hi Maddie

    I was diagnosed with wegeners granulomotosis vasculitues in Xmas 2007 with positive anca, and limited nasal disease.

    Nine years on I have fibromyalgia, arthritis , skin lesions along with wegeners.

    Whilst the wegeners does go into remission it most definitely will return to flare up at regular intervals.

    I started on metheroxerate rapidly followed with cyclophosphamide due to rapid onset of disease.

    I'm now, or was rather , being given ritoximab ( ritoxan) which started of being every 12 monthly infusions but we're dropped to six monthly due to flare ups around winter time.

    The reason I write this to u is for u to enquire about this treatment as rarely does cyclo keep this sucker locked away. The reason why cyclo etc is given rather than ritoximab is cost, this being £6500 per gram of which u would receive two grams per year. Basically u don't have time on ur side and messing with what the medical profession call bronze silver or gold treatment ( cyclophosphamide is classed as gold level), ritoximab is in the platinum range and offered when all else fails.

    I was a successful builder , I'd just got a hefty mortgage and didn't get any health insurance, life insurance etc and nearly lost everything I had worked for and all because of the cost of the treatment , it brought into perspective that my life was worth less than 15,000 pound a year to the doctors whom were holding back. The worst thing about this is when I was diagnosed my business was booming and 15 grand to keep me alive was nothing in comparison however it took 3years for me to find out about this treatment and by then I had to rely on the NHS and after several letters to Queen Elizabeth health trust I was granted treatment. Nowadays it is easier to be given this but the doctor are reluctant which I understand to a degree.

    Maybe u should be on this.

    Today I work when I can, when I'm well enough to.

    I'm alive and I live a good life with my partner and son, even if I wake in pain and go to sleep in pain. Secondary illnesses that follow wegeners are the problem. I believe these are brought about from the treatment of cyclo etc.

    One problem I do have is I have no immune system so since November I've had a bad cold and worst cough. Come the summer my body thrives in comparison. Basically those that live in sunnier climates have less secondary illnesses. I say this coz if u in a position to retire to sunnier climates then do so.

    Having this illness in ur kidneys means u have a long way to go and I wish u all the best.

    Please do not hesitate to ask should u have any questions. For the first few years of my diagnosis I had no one to answer the questions u get once u rave that hospital room

    All the best

    Jay

    • maddie26625
      maddie26625 jay1jay

      Posted

      Hi which hospital are you under? I think I need to ask about Ritoxab. My kidneys are not effected too badly it's mostly my respiratory system. My last X-ray was getting clearer but need another CT scan after Cyclo.

      Thanks for sharing its good to hear from others. The dr said this could go completely into remission as I'm responding to treatment but Aldo they really have no idea as the disease effects all of us differently.

    • jay1jay
      jay1jay maddie26625

      Posted

      Hi,

      Queen Elizabeth hospital , Birmingham

      Under Professor Loraine Harper. The clinic runs Thursdays and Fridays.

      All the best

      Jay

    • sarah65055
      sarah65055 jay1jay

      Posted

      When I first was diagnose with Wegener's, I found information from Birmingham. I thought that they meant Birmingham, Alabama, because I live in Alabama, USA. But when I kept reading, I realized that they meant Birmingham, England. I am very interested in finding out where this disease came from. I feel like my mother, who is deceased, had symptons of Wegener's. I have traced her heritage back to Scotland. I know Wegener was German and was associated with the Nazi's. I feel that I have had Wegener's all my life. I was always sickly, always had sinuses problems, and always had pain in my extreminities. I would have spells were I would get down so weak, and I would have to work my back up on my feet. If you have any feedback on this, I would like to hear about this. I hope you do well.

    • jay1jay
      jay1jay sarah65055

      Posted

      Hi Sarah

      Fredrick Wegener was French I believe. He stumbled on the disease and named it after himself. ??

      I have horrid nasal issues. I have no septum and about 6 large holes leading to God only knows where. The slightest bit of dust in the air triggers mucus production which results in thinking I have a cold but if only.

      The winter is arduous to say the least and being a builder doesn't aid my situation.

      If I can give anybody advice it would be to research everything u are given from meds to nasal washes.

      What's good for one don't mean is good for the other.

      For instance, a chap I see regularly at the ritoximab infusions has been on ritoximab for four years yet he goes for the infusion in between work, on his own, and sits through the infusion and after in great health whereas I have to take a driver with me and I'm useless to man or beast for two weeks during and after the infusion. It makes me real ill for 14-20 days but works magic

  • sue5879
    sue5879 maddie26625

    Posted

    Hi Maddie,

    I was diagnosed a little over 3 years ago. It took several months and me being very very sick before they were able to diagnose it. It attacked my lungs. I couldn't walk from one room to the other without panting for breath. I have a wonderful pulmonologist

    who recommended pulmonary rehab. I went two times per week. It took a while but it strengthened my lungs and I was able to function a little better. However, it was very difficult when I tried to return to work and eventually could not work any longer.

    It was difficult not being able to do things I loved such as gardening, but I adapted.

    In September I had a flare up and ended back in the hospital. This time in addition to attacking my lungs it attacked my kidneys. I went from having perfectly normal kidneys to stage 4 renal failure, 16% kidney function. The doctors were talking dialysis. Of course I was devastated.

    While in the hospital they did a series of treatments called plasmopheres and then I started the rituximab infusions again. I was on mega doses of prednisone and my azathioprine dosage was doubled.

    I am getting a little stronger but it has taken it's toll on me.

    I have cut out using additional salt completely. I drink 64 ounces of water daily and I am trying to educate myself regarding kidney friendly foods.

    My last doctor's visit 2 weeks ago showed much improvement. I am at stage 3 and as of yet no dialysis. So I feel very blessed.

    I am 62 years old. The best advice I can give you is just keep pushing through. You'll have good days and bad days but you will adjust. This is a dreadful disease and very dangerous. Do what you can and try not to stress over what you can no longer do. I hope this helps.

    Sue

    • sarah65055
      sarah65055 sue5879

      Posted

      I am 68 years old and was diagnosed when I was 61 years old in June 2009. I was working and doing good when I feel like the rug was just snatch out from under me. In 6 months I was just an invalid. I lost all of my potted plants and had to just let my yard and garden go to weeds. But I don't give up. I'm having problems with my lungs and sinuses but I will keep trying until I can't go any futher. I hope you do better. Keep in touch.

    • sue5879
      sue5879 sarah65055

      Posted

      Hi Sarah,

      Thanks for sharing. My yard and garden had also gone to weeds. Thankfully I have perennials that can still poke through the weeds and flower LOL

      I read the other day about a 29 year old young man who was diagnosed with WG. I am just thankful that I got it late in my years.

      I have been told by several doctors that this disease is not hereditary however my sister was diagnosed with it 10 years ago.

      It attacked her kidneys, she is in stage 3 renal failure. It also caused paralysis of her right foot and couldn't walk. They didn't have rituximab when she was diagnosed and was given cytoxin, prednisone, methotrexate. She eventually regained the use of her feet and legs. She still works but the drugs lower her immune system so much that she is always sick.

      She lives in KY and I have lived in Kansas City for the last 40 years. Her doctors and mine are stumped and confused that 2 sisters that don't even live near one another both came down with WG. Her rheumatologist thinks it could have been something in our environment as children.

    • maddie26625
      maddie26625 sue5879

      Posted

      Hi Sue. Thanks for the response. I am responding well to Cyclo at the moment and hoping after my this finishes in nine weeks then tablets will help. I am returning to work next week as even the specialists have no idea how this disease effects us Di they?

      I feel pretty strong at the moment and hope it continues.

      I'm pleased your kidneys are improving.

      Keep up the fight.

    • sue5879
      sue5879 maddie26625

      Posted

      Hi Maddie,

      I'm so happy you are returning to work! Returning to your normal routine is very beneficial. It sounds like you are doing good. You will be in my prayers, keep in touch. 😊

  • sarah65055
    sarah65055 maddie26625

    Posted

    I was never able to return to work, but I wasn't diagnosed until I was 61 in 2009. My kidneys have not been affected, thank God, but my lungs, sinuses and respitory system have been affected. I hope you get better and can go back to work. I'm 68 now, but I would love to go back to work.

    • maddie26625
      maddie26625 sarah65055

      Posted

      Hi Sarah I'm trying it out next week for 25% of my normal time huildjng up over the following few weeks. Hopefully I will be fine.

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