Full-blown Wegener's Granulomatosis

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?

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.

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

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

Hello Ian, Fiona, Debbie, and Jill

Thank you all for your inspiring and encouraging stories!

My dad (61 years old, formerly fit as a fiddle) was diagnosed early June 2015 with WG after overnight losing his vision on 30 May 2015. Since about 5 years prior he has always battled with chronic sinusitis. Now it makes sense. I also remember a few complaints about his sore joints in one hand.

He hasn't experienced any kidney problems. Though side effects from the treatment (which I'm sure must have been the same treatment - the cocktail of pills) like weakening muscles and loss of calcium made for a minor accident resulting in a vertebrae fracture. It was healing well until last week his coughs reappeared. They are now calming down, thankfully.

He is now at the end of his 6 month treatment, which started in South Africa (home). He has been in Beijing, China for about 5 months now because he thought to get hold of good acupuncture to facilitate recovery for his vision. Since, he has seen for a few seconds which is very hopeful.

Thankfully he and our family have always had a peace, but I must admit this period in the recovery process is tough because he is so debilitated compared to what he used to be. Your stories have spurred further hope, so we are keeping the faith well alive. Thank you all, and thinking of you.

- Fei