New to this website & Wegeners

[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.