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ihbs
07-28-2008, 11:56 PM
Hi,

Just wanted to know if others have same or similiar symptoms as I do I tested positive for wageners and just recently been tested again.

Thanks
ihbs.

andrew
07-29-2008, 07:51 AM
Hello!
Symptoms of WG vary widely. Typically, they can be aching joints, fever, high ANCA level, sinus complaints, blood in the urine, shortness of breath etc etc etc.

Usually what we find is that it's hard to diagnose because many of these complaints manifest themselves differently and can be related to other issues. The blood in my urine for instance, was diagnosed as kidney stones (until I got a scan). My sinus problems were just diagnosed as a standard ol' sinus infection. It wasn't until a few months later that it all snapped into place and a diagnosis was made :)

What symptoms do you have? What caused the Doc to diagnose WG? I'm assuming it was a high ANCA reading combined with perhaps a biopsy?

Welcome to the site!

Andrew

ihbs
07-29-2008, 11:49 PM
Hi Andrew,

Thanks for the kind reply. In my case I felt really horrible and was sleeping all the time I just did not feel right and went to the ER they did labs and stuff then told me I had to stay. I was diagnosed with autoimmune hepatitis the week I was in the hospital was a blur except for the liver biopsy. I had no idea what it all meant but knew it must be serious because they said they would send me where ever I wanted to go. I had no idea what they were talking about so I told them they needed to level with me. They did real fast and basically told me I would die if I did not respond to the medication which was Imuran and prednisone. They also requested that I go to the University hospital and sign up for a transplant then reality set in and I was horrified. It has taken a lot of time and research of course to remotely find out all that is going on with me. I did go to University Hospital signed up to find out I was not sick enough for a transplant and also to find out what was involved in that. They asked me to see several doctors which I did and one of them was a Rheumotologist because I was also suffering from spinal pain. I was told that I had all kinds of things wrong with my spine, the initial diagnosis of Auto Hep, was an autoimmune disease caused from another one which was called thyroiditis, low thyroid (Hashimoto's) I was shocked however the kicker came when they did blood work only to find a positive ANCA
which was suggestive or positive for wagener's they said I was already on
the meds for it so there was no reason to worry. My doctors said I was fine and never followed up on it until now. I changed Dr.'s and she went nuts telling me that I needed to be followed on that is was serious and she ordered a whole new set of test for this confirmation. Dr. is also thinking that I may have Sjorgrens on top of all this. That is how I ended here. I have always had sinus problems, ear, nose & throat problems, now I have lung problems, kidney problems, skin problems, headaches, joint pain. So there you have it. I feel like I should just move into the Doctors office because it is a drag all the appointments and also the tests. Prior to the hep I was diagnosed with Multiple Myeloma, and Lupus which were incorrect. I have been threw the gamit.

ihbs

andrew
07-30-2008, 05:24 AM
Ouch! You've certanly been through the mill. I'm glad you have a responsible doc now. The other one sounded like he just didn't care.

Imuran and Prednisone are great. The Pred especially is a wonder drug, even despite its side-effects. Has your doc mentioned Cyclophosphamide (Cytoxan)? That is a chemotherapy drug that can be taken by WG patients prior to, or instead of, Imuran. Think of it as the sledge-hammer that knocks the WG into submission :) Well and good though if the Imuran is doing its job.

There will be a lot of tests at least in the immeiate future. Eventually though, they should become less regular and cumbersome. Also, like me, you'll make new friends at the Pathology centre and be on a first-name basis with the nurses :). I'd like them to introduce a 'frequent jab' card or similar where every ten visits you get to test THEM instead :D

I'm glad you found us. Please let us know how your latest round of tests goes.

ihbs
07-30-2008, 11:02 PM
Hi Andrew,

No my Doctors have not mentioned cytoxin I have been off of predsone for over a year. I have very bad side effects from it tackycardia severe on just 20mg so they just lowered the dose also suger went up very high.
I am very sensitive to a lot of medications because of the liver it will not process it. I have reaction to the mildest things. I appreciate your posts and am very happy to be here.

Thanks
ihbs