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 !? :mad: 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.

[brocky99]

Hi and welcome to the group. I never had sinus problems other than what i thought was flu but not had any trouble since being diagnosed but it has got my lungs but not that bad and attacked my kidneys which were doing ok for 15 months until i had a flare in Jan 2010 and now I am just about to start dialysis on wednesday. I have had to deal with the wegeners and now the kidneys failing, so unfortunately i have had a past few rough months but have hopefully got my head around it a little bit and i understand dialysis will keep me going whilst waiting for a transplant but i am getting more worried as the day gets nearer. Im sure it will be fine and im ok with needles especially with all the blood they take off us but im still worried it will hurt. I think it is just the unknown that is bothering me. But I am putting on a brave face and i am hoping the energy they say it will replace will make it all worth it. Hope yours husbands goes into remission soon I was in remission within 6 months of 1st diagnosis but with several drugs to take every day, and was great apart from shortness of breath and a few aches and pains for a further 9 months until the flare, but these things are set to try us and help us understand the different faces of wegeners. Everyone on here is very friendly and very supportive I have vented a few times and everyone has been very understanding etc. and they all give you good advice. Take care and look after yourself also, my partner gets a bit upset when everyone asks how I am and never asks how he his coping and like he says he is going through it also with me and likes some support as well. We have 1 friend who asks how he is 1st and then finds out how I am. I know he says it is hard to watch someone you love so poorly and there is nothing you can do to help and then I take out all my frustrations out on him also because he is there.

[Jack]

brocky - I was not on hemo, but I've never heard anyone say that it was painful or even uncomfortable. The only stories I have heard about it are of people taking in all the stuff that they are banned from eating because the machine can suck up all the by-products! :)

[staystronglivelong]

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.

Hi Jack, glad you got a kidney transplant. :) You are a valuable asset to this site. How long have you had WG? And how many flares have you had? My husband has always been a strong, hardworking man who won't stay still for long, - always washing the car,mending the shed - never been one for sitting relaxing. The work that he has been doing is very physically demanding work on a building site. He is being more optimistic than me and thinks he can return to the same job. But I think it will be too much for him. I don't know though.

[Jack]

I've had Wegener's for 25 years. During the first 5 years I had repeat relapses, but then had a good 15 years of health with just the odd period of sickness - you don't get off for free when you take a cocktail of drugs every day! The last 5 years have been a bit rough and I've had to retire from work. However, you should not read any of this across to your husband's case. Every patient on here has a different story to tell. Some reach remission within months and can even get off the pills, others never get there at all. That is why you will hear so much about being treated by a vasculitis specialist. They need to treat each case on its individual merits and there are now alternative drugs coming to the market which are appropriate in some instances. Nothing to replace the Prednisolone at the moment though. :(

[staystronglivelong]

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. :)

AHHH, very good advice. I am finding changes in his personality and have to let it go over my head when he snaps for no reason or gets very touchy when I didn't think I'd said anything wrong. My husband was snoring terribly until he got on the treatment and his nose started to be less inflamed. Yes, our partners need their sleep. Will try and keep him doing things slowly bit by bit, but its not in his nature so we'll see how we go. He's being a good patient at the moment :)

[staystronglivelong]

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

Hi Elephant. Hope you're not having a flare. Don't know much yet about Wegs. Stay Strong Live Long is my husbands new motto - glad you like it.

[brocky99]

Hi Jack

I think I have been reading too much on the net. My old boss took me for lunch today and told me off for reading every detail I can this is where I have read it can be painful. But i have also spoken to my friend whos mum has vascalitis and about 12 months ahead of me and she said her mum was fine she just gets cramp, which I can definately live with. I guess I am a bit apprehensive and the thought of god knows how many months/years ahead of 3 days a week 4 hours a day makes me realise life will be very different from tomorrow. But has its been said many timwe before its about finding a new normal. Thanks for the reassurance wil let u know how I get on tomorrow.

Lisa

[Hammy8241]

AHHH, very good advice. I am finding changes in his personality and have to let it go over my head when he snaps for no reason or gets very touchy when I didn't think I'd said anything wrong. My husband was snoring terribly until he got on the treatment and his nose started to be less inflamed. Yes, our partners need their sleep. Will try and keep him doing things slowly bit by bit, but its not in his nature so we'll see how we go. He's being a good patient at the moment :)

He'll learn.lol I found that once I discovered I WAS snapping at my wife (was in dinial for a while) I was able to control it a lot better. Sue manages a lot lot better with a good night sleep too!
Keep strong.

[eileenv]

Hi Elephant
Just reading that you have sinus problems with your wgs, just wondering if you could offer any info as to where i am at the moment. Ent says likly i have wegs and rheumy saying probally, i currenly had an xray of sinuses which showed opauqe looked dark erea on the xray on the left side rheumy has ordered a CT scan which i have next week. When ENT done an endiscopy he could see i had problems on the left sinus also has a deviated septrom spelt that wrong i know!! but said otherwise nose looked not to bad althrough i had the problem with nose constantly running about five months ago. Rheumy is sending me back for a biopsy.
Thanls

[eileenv]

Hi brocky99
Sorry to hear that your that you are going to have dialysis and hope everything goes to plan. Can i ask you how your problems with your kidneys srarted, was it bloods that showed a problem,
or symptoms i still haven't had a definite diagnoses myself.

[Jack]

Hi Eileen,

The usual way to get a good Wegener's diagnosis if you have active disease in your sinuses is for a biopsy to be taken. The presence of granulomas will confirm Wegs, but the lack of them may just mean that they did not look in the right place. This information is then considered along with your blood test results and any other symptoms.

The problem with renal failure is that it does not have any specific symptoms until almost too late. Blood test results will show if you have a problem so long as the consultants are looking out for you. In my own case, I went from sinus trouble to full blown renal failure in around 2 weeks.

[eileenv]

Hi Jack,
My rheumy is sending me back to the ent to get a biopsy done i did ask at the time. Also going for a CT sinuses next week. Rheumatoligist was going to change meds but wants a conformation of biopsy first,. Currently on 7.5 pred and 400 plaquenil. I was feeling terrible went to docters and bloods showed ers 50 and crp 48 GP said i would just have to put up with flare but i contacted the rheumy and he see me a month earlier. Anyway Jack thanks for your reply and have a lovely few days away. If and when i get a firm diagnoses then i will ask to see wegener's specialist.

[elephant]

Hi Eileenv, yes I had four maxillary surgeries and runny nose and sneezing...but left maxillary sinus a mess..CT scan showed it was totally blocked. It is damaged from WG and I have to do sinus rinses for the rest of my life..this is just one part. WG has attacked many parts of my body.
What medicines are you on now? How are you doing?

[brocky99]

Hi Eileenv,

My Kidneys were affected from the start. I started in May 2008 with pain in my foot which quickly spread to all other joints to the point where I was stuck upstairs for days at a time because I couldnt get downstairs, that sounds bad but we lived in a big 100 year old pub and the stairs led down into the centre of the pub so I was also embarassed to attempt to go downstairs when we had customers in and felt it was better to stay upstairs out of the way, I was only 32 at the time. I had visited my dr who diagnosed rheumatoid arthritis, I saw a specialist and was put on some strong painkillers which didnt really help, but eased it a little. This went on till October 2008, with Glyn having to dress and undress me every day and not being able to do anything. In October 08 I started with a cold and feeling generally under the weather, then it got worse and I wasnt eating and spending all day in bed unable to motivate myself to move. I was like this for about 3 weeks and black blisters had started to appear on my ear and face and some on my chest, one Tuesday night I couldnt take any more I had cold sores and ulcers galore that were stinging whenever I tried to close my eyes for sleep the blisters werent itchy but looked a miss, so I asked my other half to take me to the local A & E department for some painkillers because I had run out. There a dr looked at me from the other side of the room diagnosed impitigo and gave me some co-coldamol and some cream for the blisters which I knew were not impitigo. So I went home and dosed myself back up on pain killers, and stayed in bed for the rest of the week. Then on the Friday morning I must have been screaming in pain, I cant remember, and Glyn phoned the doctor to see if he could come out to have a look at me but they said no so he pu the phone down and dialled 999 and got an ambulance. I was rushed to hospital and they gave some morphine so I dont remember much after that. But apparently they did blood test and urine tests and from that discovered my Kidneys were not working very well so they transferred me to another hospital the next day to a renal ward. They did more tests and a kidney biopsy and ct scans and ultrasounds and within 4 days I had been diagnosed with WG and put on the usual drugs. My kidneys were at about 11% then but improved to 35% by the time I left hospital. I was doing Ok and after the 6 months of cyclophostamide was put un azathioprine as a maintanence drug. I did Ok on this till Jan this year when I had a flare. I ended up back in hospital and was tol my kidneys were at 20% but that was ok and they should hold out for a few years yet if I carried on with the renal diet etc. They discharged me on the Thursday and on the following Monday I went for cyclophostamide to the day ward where they did my bloods again and my kidney function had gone down to 14%, the dr was not happy that I had lost 6% function over the weekend and it has gone downhill from there. I had to wait for a fistula to be done and then wait for it to mature which is why I have only just started dialysis, Last week I felt sick all day every day and the dr said they have prob just started me in time. I was at 5% last week when I had bloods done. I have had 2 sessions of dialysis now one wed and one fri. The neddles hurt slightly when going in but its fine after the initial sting. My arm is black and blue though and very tender. The nurse said my blood vessel is very soft and needs to toughen up then it wont bruise hopefully. I dont really feel any different at the mo still tired but I have read it will take a few weeks before I start to feel better. Hope u get a diagnosis soon and they can start treating you accordingly. Take care
Lisa xx

[Sangye]

I'm glad you got started on dialysis in time, Lisa. Hang in there-- you're getting the right treatment and things will begin to shift towards healing little by little.

[brocky99]

thanks sangye hopefully in a few weeks i will be feeling tons better, feeling a bit down at mo but its just the prospect of years ahead on dialysis i think, i will soon get my head around it, and my arm looks like its been 10 rounds with mike tyson.

[Sangye]

I can't imagine having to deal with dialysis on top of learning to live with the reality of Wegs. Hang in there. Wegs is a physical and emotional rollercoaster and not just a downhill slide. You can be very down one day (or one moment) and feel optimistic the next. We'll get you through it. :)