Newbie

[Barbara H]

Hi
First let me say I am not sure whether I am here under false pretences. The renal specialists have not called my disease Wegeners, they called it pANCA vasculitis then something long and complicated beginning with g. trollong round the web I came to the conclusion it was the same. If I am wrong then throw me off by all means.
I started before Christmas 2009 feeling sick and retching when trying to eat, feeling breathless and exhausted, and coughing but not bringing anything up. The breathlessness I put down to chest infection, but it turns out it was "multiple" blood clots on both lungs. The GP said "you have been fighting a flu-like illness, your energy will come back in its own time" he fobbed me off twice like that, but then the practice nurse sent me to another doctor at the same practice, and he sent me for blood tests which showed kidney function down to 12%. then there was a lot of phoning to get me into Hope Hospital where there is a specialists kidney unit, and I was in there in May last year. Thank God! they immediately put me on a steroid drip, and then on oral steroids, and to my relief my kidney function began to improve.
when I left the hospital it was 25%, and I was told it would not increase more than that because of damage to my kidneys. Then after a bit it started to go up again and levelled out at 34%. Last reading it was 39% and I am hoping that is not just a flash in the pan.

I was still breathless and had a ct scan in June when the blood clots were discovered. I have been on warfarin ever since then, and am now breathing much better. My pANCAS which were 1/500 when I first went are now down to 1/32 the doctor says he is not too worried as this is quite low, and if we get rid, there will be a far less frisk of the vasculitis coming back. A big part of the treatment was cyclophosphomide infusions which have now finished, but next week I am going for an iron infusion. I am also to be put on azithiazine next week, so will see how things go with that.

I have not had severe pain in joints or muscles, which makes me think I might be on the wrong site. If this is so, forgiveme, and I will retire gracefully
all the best
Barbara Harrison

[Brooke]

Welcome to the group Barbara, I do not have any joint problems myselft, never had. So, I don't think all people with Wegener's have joint pain? If so, I would wonder about myself too!

[Daggar]

Hello Barbara,

Sorry to hear about your illness.

There are 3 "G's" to choose from:

Goodpastures
Wegener's Granulomatosis
ANCA Glomerulonephritis

You've either found the right site and your one of the rare WG patients (20% I believe) who test positive for pANCA rather than cANCA -- or -- they described your kidney issue as "ANCA Glomerulonephritis" caused by one of the forms of Vasculitis -- or -- Goodpasture's Syndrome (did you test positive for an antibody called anti-GBM?)

I'm not half as knowledgeable as some of the folks on here but my guess would lean toward WG because the Glomerulonephritis is basically limited to Kidneys and a negative test for anti-GBM (Goodpasture's) leaves WG.

My daughter Holly was admitted to ER back in November 2010 with a kidney function at about 25-30%. That climbed to 40-45% by the time she was treated for WG and released. We're now at the 3-4 month mark and she is sitting at about 65%. So there is hope that the kidney damage was not permanent. Did they do a kidney biopsy? That would give them a better overall picture of how much "permanent" damage was done.

This website could be very helpful even if you don't have WG because a lot of the info is "vasculitis-based" and the treatments/side effects can be much the same.

Hope you find the answers you need!!

Gary

[Barbara H]

Thanks for your replies! My memory seems to lean to the ANCA Glomerulonephritis. I will be pleased to be member of this site, though, if I am still welcome. Yes I did have a kidney biopsy, and the written report says "confirmation of necrotising Glomerulonephritis with some chronic scarring" So I suppose it is actually ANCA Glomerulonephritis. To me it still sounds very similar to wegeners, so would be glad to stay but its up to the other members.
love and best wishes to everyone on the site

[Daggar]

I'm not sure -- the cold-symptoms and lung activity may be WG but you should confirm the diagnosis. Glomerulonephritis could be the result of WG.

Welcome aboard!!

[Sangye]

Hi Barbara, yes please leave this group immediately! You can come back when you have proper symptoms like joint pain. Slacker! Imposter! LOL

Okay seriously, welcome to the group. It sounds like you've "only" had kidney involvement and blood clots in your lungs. Wegener's makes people much more likely to develop blood clots, and I wonder if p-ANCA vasculitis does, too. I have no idea if people with p-ANCA glomerulonephritis have other symptoms like joint pain and fatigue. Not all Weggies have them, either. Actually, there isn't a single symptom that all Weggies share. It's highly variable.

Many vasculitides are treated the same as Wegs. It sounds like yours is. I hope you do well with the transition to imuran.

[freakyschizogirl]

Hi Barbara, yes please leave this group immediately! You can come back when you have proper symptoms like joint pain. Slacker! Imposter! LOL

I dont have joint pain, should i pack my bags too?? lol

[Sangye]

Outta here!!

[Barbara H]

Hi thanks for all your replies. I can remember now how it was first described. I went for tests to the hospital, and as soon as I got back the hospital doctor was on the phone telling me to go straight back "The sooner we start treatment, the better the chance of saving your kidneys (that was a shock!) you have one of these rare auto-immune diseases, it affects the kidneys and lungs" I asked does the disease have a name and she said p-ANCA vasculitis glomerulonephritis. Quite a mouthful to sink in, when you are still reeling from finding you have a serious illness and your kidney are threatened! No wonder my brain went into a flat spin! Any way it apparently is not WG but it certainly seems similar enough for me to learn from people who have it.

[Daggar]

Your story sounds a lot like Holly's -- we were unhappy with our GP writing up prescriptions and signing her up for pyhsio so we took her to the Children's Hospital ER to have her checked. Luckily we did because they admitted her right away, diagnosed her within 48 hours and started treatment at that point. It probably saved her life! Her kidneys were in a mess at that point. They checked her for upper respiratory involvement but that came back negative. She's been on the treatment now for nearly 4 months and all signs of WG have cleared up, however, the kidneys were damaged and she's had some side effects from the drugs that we are now dealing with. The lung and kidney involvement can happen with WG as well -- one or the other, or both