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wegeners granulomatosis

(18 Posts)
wrinklytum Sun 23-Sep-07 16:44:48

dp just diagnosed (after misdiagnosis of metastatic cancer!) Anyone with any experiences?

wrinklytum Sun 23-Sep-07 19:49:27


belgo Sun 23-Sep-07 19:53:14

It's an unsual auto immune disease. What treatment is he on?

belgo Sun 23-Sep-07 19:57:00

he must be quite ill if they thought he had metastatic cancer.

fryalot Sun 23-Sep-07 19:57:02

hi wt.

Sorry, no advice for you but wanted to say hi - not seen you around for a bit.

How is dp?

(if that's not too stupid a question)

wrinklytum Sun 23-Sep-07 19:57:57

just starting steroids,have to clear up fungal chest infecion that was what made the docs initially think he had lung metastases,then they will hit him with some immunosuppressant therapy compromising a cytotoxic called cyclophosphamide.Do you know anyone with this condition?

belgo Sun 23-Sep-07 20:04:08

It's not a nice disease but there are treatments for it that can put him into remission. The types of treatment are improving all the time.

I used to be a nurse in England and came across a patient with this, but I don't know anyone personally.

belgo Sun 23-Sep-07 20:06:39

Forgot to say, wishing you and your dp all the best with dealing with this disease.

wrinklytum Sun 23-Sep-07 20:09:20

He has been VERY ill for four weeks.It all started with acute prostatitis and apparently it is very rare for it to present in the prostate.He was passing loads of frank blood and pus in his urine and needed a suprapubic catheter in.Then coughing up blood etc.,he has had clots on his lungs and a big one on his main vein.He had to have a special IVC filter fitted to stop clots travelling around his bloodstream and has been on shedloads of anticoagulants.He also went into acute renal failure and required dialysis and had femoral and jugular lines inserted,as well as bilateral nephrostomy tubes to give his kidneys a break.He lost 2 stone in 3 weeks and looked like a walking corpse.Then he came out with all these vascular pustules all over his legs and his eyes have gone bright red!!!!He has seen practically every speciality in the hospital including the haematologists I work with and had a bone marrow biopsy to exclude lymphoma.I have never been so terrified in my life.Poor bugger is only 39!!The rheumatologist consultant is fab though and I was relieved by the diagnosis even though it is not pleasant it is better than lung metastases!!!!!

belgo Sun 23-Sep-07 20:13:45

your poor dp, and poor you. It is a very nasty disease. At least now they've diagnosed it they can start the appropriate treatment. Some of the treatments are very strong - a form of chemotherapy. Is there a specialist nurse who you can see?

VeniVidiVickiQV Sun 23-Sep-07 20:15:09

Sounds similar to Henoch Schoenline Purpurra, which my brother had when he was 8.

That was pretty nasty too. Auto immune condition too. Caused swelling in his joints as well as some of the things you described.

wrinklytum Sun 23-Sep-07 20:19:39

I anm sure there will be.I give cyclophospamide to patients at work,in higher doses than he will have so sort of know what to expect re side effects etc.I think it has just been a bit of a rollercoaster ride and I needed to get all the uncertainty of the last few weeks off my chest.In my mind I had him dead and buried a week ago!!!![SHOCK]

fryalot Sun 23-Sep-07 20:30:12

wt - do you need any practical help? If so, please, please don't hesitate to ask... in Yorkshire terms I'm "just around the corner" so it won't be any hassle for me to pop over and do "stuff" if you need/want it.

wrinklytum Sun 23-Sep-07 20:34:30

Thanks Squonk,I am ok currently,now we have a definite diagnosis but was in severe panic mode for most of the last few weeks.So what is happening on mumsnet,what have I missed?Has j2o had her baby yet???

fryalot Sun 23-Sep-07 20:37:14

J20 very very close - still a week and a half from due date but she's lost her plug and is leaking water so it sounds like it's getting close (sorry if you're reading this, J20, have been lurking on your thread blush) We have a meet up planned (but no date) so if you are able to make it, that would be great.

Not sure how long you've been gone for... you know Peter got his transplant?

It sounds like your family has really been through the mill recently - how fecking awful! Iirc, your family aren't too close? Must have been an absolute nightmare. I don't know much about wegeners (except Dr. House always diagnoses it and it is always something different) what is the prognosis for dp?

wrinklytum Sun 23-Sep-07 20:45:39

I think because they found it when they did things are pretty good.Left untreated it has a 95% mortality rate according to the consultant,however they are hitting him with steroids and chemotherapy drugs to supress his immune system and stop it attacking itself.There is the possibility of relapse but there are things they can do should that happen.He still has a long way to go and still has tubes into his kidneys that will need re plumbing by the nephrologists at some point.Still has a catheter in too,and I am sure he will be on long term anticoagulants for all the clots.Whether he will work again remains to be seen which is a bit of a bugger as he is self employed.At least he is still here,thoughgrin

wrinklytum Sun 23-Sep-07 20:47:05

I did see about Peters transplant as very briefly mumsnetted about 3 weeks ago.That was great

fryalot Sun 23-Sep-07 20:59:11

you're right, the main thing is, he is still here.

Glad that they've caught it when they have - it sounds horrendous when not diagnosed.

Off to spend some time with dp and dd1 - don't disappear again <<<looks sternly>>> and give dp a mumsnet hug from me

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