New to this website & Wegeners

[staystronglivelong]

Hello Everybody. I'm glad I've found this community because my husband has been diagnosed with wegeners and it feels very dark and lonely to be told you've got something so bizarre !? My hubby started feeling unwell about 3 months ago. He had a cold and seemed to be getting cold after cold after cold, then he just had a cough which was worse at night. Then he seemed to stop coughing and developed a blocked, constantly runny nose, lost his sense of smell. We thought he'd got hayfever so he tried tablets and nasal sprays. He was feeling very unwell. Docs gave him steriod tablets and antibiotics- when he finally went about 3 weeks before he was diagnosed- he had a very swollen upper nose which was always swollen but would swell more and then go down abit, but was always swollen - it just used to get bigger every morning. I took him to an nhs walk in centre where they said its sinusitus which is what the doc treated him for. Now, he was severely unwell for the 3 weeks before his diagnosis with a constant severe headache which was unbearable at nightime - he couldn't sleep normally. The top of his head always felt sunburnt which has only just gone a couple of weeks into treatment. It was mainly the awful headache that drove me to nag and him to keep going back to the docs. The doc couldn't see up his nose at all and said she had never seen anything like it and referred him to qmc nottm's ENT the next day. Where a doctor tried but failed to see up his nose with a camera, it was too inflamed. Luckily she took some blood which ultimately showed up the wegeners. Still, he had to go back to the docs a week later as the constant pain he was in was unbearable. So a week after the blood was taken, he went to the doc, who chased his results up and informed him that he had WG. He was referred that day to qmc to see a doc who said I want to admit you today or tomorrow so we can get intravenous steroids into you. He started that day (thursday) on 60mg preds and the next day went into hosp, had all the tests, steriods by drip, stayed in overnight. came home friday. Then went back in on the monday to have cyclophosphamide. Which he is feeling fine off so far. He feels better than he has in 3 months anyhow.

[Jack]

Hi,
So sorry to hear about your husband, but glad to hear that he had a fairly quick diagnosis. Where is he being treated? Do they have a specialist Vasculitis unit? I ask this because Wegener's is such a tricky disease and does not follow any rule book so you must have specialists who have a great deal of first hand experience. Things can go wrong very quickly if you are not treated correctly for your particular case and the damage can be permanent. I developed Wegener's 25 years ago, but lost my kidneys before being transfered to the care of the Queen Elizabeth Hospital in Birmingham where they have a vasculitis research team.
There is a lot to learn and knowledge is power so please ask any questions that occur and you will always get an answer from the forum members. If you just feel a bit lost and scared that's OK too and you will find support from people who have been there and know how it feels.
Best wishes to your husband. Hope the Cyclo and Pred do the trick.

[Hammy8241]

Welcome. Good to know that your husband has got treatment started and is feeling better. I had similar symptoms in the begining too.

Best advice i can give is learn to listen to your body as no matter how well he may feel one day, to do too much will cause suffering the folowing day or two. Fighting the disease does not seem to work ( although we all try at first) but working/understanding WG does at least make life tick over without too much drama.

Getting information about WG is also difficult as i find that I only have my consultant to talk to and I keep a list of questions to ask ready for every visit. This forum is the best way IMO for day to day guidance as its advice from those who are both long term and recent WG sufferes and their supporters.

Keep in touch and let us all know of his progress.

[Sangye]

Welcome to the group. I don't have anything to add to Jack and Hammy's excellent advice-- just wanted to welcome you and encourage you to keep posting. Wegs is a long haul. Hang in there and let us know how we can help you and your hubby.

[staystronglivelong]

Thanks everyone for being so kind. Nice to have somewhere to go where we can all share our knowledge (however big or small it may be). Hi Jack. My husband is being treated at the Queens Medical Centre, Nottingham. I don't know if its a specialist vasculitis centre, they seem to know what they're talking about (we hope). Sorry to hear you lost your kidneys. Are you on dialysis? My husband was diagnosed very quickly it seems, from what I've read he was lucky in that way. He had all manner of ultrasounds, scans, nose biopsy etc. They said his chest xray was fine. His lungs and kidneys are clear, they said its just in his nose - if that makes sense. Hi Hammy8241, how long did your diagnosis take and what were your symptoms? My husband lost his appetite, lost quite abit of weight very quickly, sweated buckets all the time also. And slept alot in the day - tired easily - which I thought might be down to the painkillers (codeine) the doc had given him, little did I realise it was a symptom of the disease. Hi Sangye, hope you're ok. Nice to meet you all x

[Jack]

I was lucky enough to have a kidney transplant - the best thing that ever happened to me (thank you doner! ). My Wegener's started with sinus problems too, but then I suddenly relapsed with the renal trouble. The disease needs careful control because it can turn round and bite in new ways at any time. The early warning of a Wegener's flare is often the return of original symptoms so if this starts to happen the quicker you react the better.

[Hammy8241]

. Hi Hammy8241, how long did your diagnosis take and what were your symptoms? My husband lost his appetite, lost quite abit of weight very quickly, sweated buckets all the time also. And slept alot in the day - tired easily - which I thought might be down to the painkillers (codeine) the doc had given him, little did I realise it was a symptom of the disease. x

Started to feel unwell in October 09, Sinus trouble, loss of hearing, tired, could not stand bright lights, ran half marathon in October by Jan could not run a mile, out of breath, sensitive scalp and nose (glasses too heavy!), headaches/ woolly head. Diagnosed in Feb,10. Did lose weight initially but when got going on the Mex / Pred cocktail and giving up running, the weight Jack lost has arrived by courier to my front door!! Sweating is common although not severe in my case.

I manage my work quite well although, I will say it is not too physical and I do take my time. Also work 4 on 4 off so I get time to rest in between shifts. Had six weeks sick (2 before/4 after diagnoses)

Hubby just has to play the game and instead of doing the garden this weekend, he splits the tasks down further into , trim the hedge, rest for double the time taken, next task, rest etc. He will not necessarily feel the need to on the day but if he obeys the rules he will be able to have a smoother life without the ups and downs that Wg dishes out as punishment for fighting it.

Finally, in many cases people do not look ill and find it strange when sufferers go quiet or get anxious over small things. I snore badly now and have sole use of the spare room! It was not easy for me as I felt it was a rejection from my partner until my sensible head kicked in later. The meds DO strange things to us and if we snap a little just point it out quietly rather than take issue with it. We don't mean it and we can't always control it. Seeing a grown man cry can also be hard but in 99% cases a cuddle goes a long long way. It won't be easy for you or your huband but be gentle (man talking!) and honest with your man and you should get many many more years out of him yet.

[Col 23]

Hi Staystronglivelong
Welcome to the group. Glad the Wegs was caught early. Hope all is going okay.
cheers
Col 23

[elephant]

Hi Staystronglivelong love your name! Welcome, I too have sinus problems and still do? Currently wondering if I am flaring?

[Carly Hedge]

Welcome!! I am a newbie to the forums myself. I was diagnosed in Aug 2009. Glad ur husband is doing better. The Condition is definitely a tricky one.