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Full-blown Wegener's Granulomatosis

  1. Hi Fiona,

    Yes, I'm guaranteed a couple of chest infections per year too. Usually though I just get an antibiotic. My prednisolone has been 2mg daily for about 3 years now and no other meds. Sorry you've had the steroids upped again. What's been your lowest prednisolone level?

    Considering my lungs haemorraged and I had pneumonia, I think it strange that I too don't have a chest physician. I actually saw a chest consultant in June (privately) for another reason who arranged a CT scan of the chest as he was surprised I hadn't had one done since in hospital 6 years ago. They see the damage (scarring) which is causing the continual sputum. No need really to do anything more because as you say \"the problem is damage related \". Regards - Ian

  2. Hi Ian,

    Its great to know that you are not on many meds.. I have been reduced to 4mg as a trial.. Had a chest infection which rapidy disappeared.. I to have perhaps 3 per year but I think that was the norm for me anyway.

    My consultant says I will probably never be off Azathioprine as my kidneys are damaged.. you give me hope to be off them.

    However I am doing the Lecht this Sunday and looking forward to it. I was out today and my Lung fitness has taken a battering with that infection. Hope you are still thinking of getting on that bike.. HAHA

    Debbie

  3. Hi Ian,

    My lowest prednisolone has ben 7.50 cant seem to get below that, I see a Renal consultant & Reuhmatology regularly and respiratory now and again when i have chest problems that the other clinics think i need breathing tests or scans for. Unfortunatley like you the lung problems restrict your life a bit more as they cause so much breathlessness.

    Regards Fiona

  4. Hi Fiona

    Just been reading your latest postings. We had visitors some months ago and one of them had a cold starting. They shouldn't have come really because they knew my immune system had been severely depressed due to wg medication. Anyway, my wife and I cought it, she got rid of it in a couple of weeks, but mine took about two months before it cleared, but it left me with a nasty cough, which has been very productive.

    I went to see the wg consultant last Wednesday 21st Sept at St Helier Hospital, Carshalton, but she did not make any reduction to my medication, which was rather disappointing. I told her about the cold and the resulting cough, wherein she gave me a chest examination and heard some crackling in my left lung. She sent me for an x-ray and a sputum test staightaway and I am now awaiting the results. I sincerely hope this is not wg starting up again!

    Hope you a making good progress Fiona.

    Sincerely - Mo x

  5. Hi Fiona & Mo & Debbie : Hope you get sorted Mo. We with Wegener's really do have to watch for colds getting onto the chest. It's difficult avoiding people all the time unless we become a hermit. I run a mile (not literally after Wegener's) in the flu season when someone coughs or sneezes near me. Best wishes to you all! Ian

  6. Hi Ian. Thanks for your comment on my recent posting. Like you, I try to avoid people with colds and run (I should say, walk) away when I am close to a person who sneezes, especially when in shops!! I am now waiting for the results of the chest x-ray and the other test and am hopeful it is nothing serious.

    I sincerely hope you continue to make good progress in you battle with Wegener's.

    Sincerely - Mo Grant

  7. Hi everyone,

    I work in a care home with elderly people and have 2 kids so Im right in the danger zone.. My 3 year old had gastro flu this summer but I escaped that.

    Its usually chest issues that get me too. Don't seem to get head colds anymore since I have had WG. The steroid information says beware of Chickenpox.. my kids have never had it . Does anyone know why that is so risky?

    Ian, that article about me in the Aberdeen University mag is almost ready and I will forward it on..

  8. Hi Debbie

    Glad to see you are still going strong. I don't get head colds since I went down with wg - this latest cold was on my chest for weeks and weeks, but it has reduced to a hacking cough. Like I said to Ian, I'm now awaiting the results of tests.

    I didn't realise that you were a university girl! I attended the City University in London and obtained an MSc! This was way back in the early 70's.

    Hope you keep on with cycling. I did time trials when in my twenties, so I know how hard competitive riding can be. In my day, we weren't allowed to use gears, only fixed wheels were allowed. It was very hard, I did 25, 30 50 and 100 mile time trials with fair results! Some French riders came over in the late 40's and rode in our time trials. They were given special dispensation by the NUC to use their gears and they did better times than the run-of-the-mill riders (like me!). When the mass-start racing started, which were originally opposed by the NUC, gears were then allowed.

    Regarding your query about chicken pox, I can only offer the comment that people taking immunosuppressant drugs are more susceptible to a severe form of the disease and a rare complication is encephalitis (inflamation of the brain). Corticosteroid drugs are also used to suppress the immune system, so the same risks apply to these. I hope this is helpful to you.

    Best wishes - Mo x

  9. Hi all,

    Seems we are all in the same boat regarding chest problems Ive been told autoimmune diseases such as WG cause bronciectasis which is my problem the lungs lose there elastisity and produce a lot of mucous which causes the constant coughing I used to cough just in the day time but unfortunatley its now day and night which is very waring I dont seem to get colds but I do use first defence if I come in contact with anyone with a cold it seems to work well. Hope you all manage through the winter without any extra problems.

    Fioa

  10. Hi Fiona (& all) : That's very coincidental that you mention bronchiectasis Fiona. I had a chest scan last month that confirmed scarring in my lung and a subsequent area of bronchiectasis at the site of the scarring. This is also then what's causing my very annoying sputum production and cough! I've had blood in my sputum now for 6 months and it appears it's coming from the site of the scarring. I was told that I have a chronic low-grade infection there and something has \"set it off\"!

    Look forward to the article Debbie!!!

    Ian

  11. Hi `Guys` my wife is in her first year with WG- one of the few with WG and a Subarachnoid Haemmorage- Have any of you had to cope with skin ulcers/sores in your recovery?

  12. Hi Folks, Sorry to read what happend to Ian and I do hope he manages to achieve some normality despite the damage this desease has caused. I was ill all of February last year, tried different antibiotics, could not sleep lying down, horrendous cough, swollen legs and feet, painfull joints, difficulty walking. GP did not know what it was so family had had enough and took me to Grantham hospital, was told I had a virus and turned away, few days later went to Lincoln Hospital same result I was too ill to argue but wife stood her ground and had to plead with a doctor to do something and I was admitted only to be discharged 5 days later as they said symptoms had reduced. My GP asked to see me a few days later saw my right knee, thought I had a blood clot and was re-admitted to Hospital whereby a consultant spotted what the problem was and kept me there for five weeks. Was on 80mg Prednisolone daily reducing to 40mg upon leaving hospital then to 20mg daily a few weeks later. Had six months chemo, sickness was dreadful during last three sessions. Managed to get Prednisolone(Steroids) down to 7.5mg daily during October but ended back up to 30mg during November/December. Despite all the symptoms pointing to Wegeners, tests proved negative I was not officially diagnosed with the condition until July last year. It has brought on arthritis in my joints, some days I cannot pull the top off a pen or squeeze a tube of toothpaste, at this point one has to get creative getting the contents onto the brush. I cannot walk to far due to breathlessness, funny though I can carry a bag of shopping but cannot carry a box, light physical exertion causes breathlessness and the desease has attacked the trachea causing it to go soft/floppy reducing airway capacity. Last month had a Broncoscopy to try and widen airways in left lung, unfortunately Trachea collapsed and treatment had to be abandoned as could not breath, still have inflamation from back of throat into lungs and dry or cold air aggravates the condition, coughing and sputum are an issue but have reduced due to taking Mucadyne(Corbisystein) (sorry if spelling incorrect), the drug Mycrophenolate mofetil has helped and I do feel the condition has eased a little during the last month or so. Have had to make some life changing decisions as I have always been fit, worked, and was planning to leave current job and go self employed as a Joiner/Cabinet Maker, had everything worked out but have given it all up and sold the equipment which was really frustrating but what can you do. It is really good to see someone able to cycle and do some of the things they used to do and I wish them every success for the future as I did not think any normality would return with this desease.

  13. Hi Wooden - You've had a rough time with our friend WG.Glad to see your wife stood up for you when the hospital were sending you home (albeit they did send you home 5 days later). It's important when very ill to have someone to fight your corner witht the hospital. Without question I wouldn't be here today if it wasn't for my wife "watching my back"! Almost 8 months in hospital you see the best and more often the worst of the so called "caring profession". The bad hygiene incidents by staff were often and shocking.

    Fatigue is my nemesis - it interferes with daily tasks that pre-WG were the norm. A chronic chest continually producing sputum is a real downer. I'm maintaining on 2mg steroids daily only which I'm amazed at considering what happened.

    Anyhow, glad you're finding some improvement of late and I hope that continues.

    Best wishes - Ian

  14. Hi Ian and Wooden

    It is with interest that I read about your experiences. I have also been diagnosed with WG and am on the what appears to be the norm : steroids and Cyclophosphamide. They also battled with the diagnosis since I did not not have some of the common symtoms. During the hospital stay I suddenly (virtually within hours) lost feeling in my left hand and developed swollen feet making it impossible to walk. The doctors say that the WG attacked my nervous sysem and that theycannot say how long it will take for the nerves to recover/regenerate, if ever. I have scanned a lot of forums but found no incidents simalar to mine and your posting is the first mention of paralysis/swollwn feet. My left hand is still lame - fingers move sightlly but no muscle action.

    Do you have any more info on recovery from such nervous related cases?

    I live in South Africa, in a remote of the country, making it even worse to get to decent medical facilities.

    Hope to can help - best of luck

    Hannes

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