Update and Worried

[NikkiNicole]

So ... I haven't been here in awhile. I was gonna have to come and delete my membership. Stanford looked at the granulomas in my lung biopsy and said the tissue appeared to be more infectious than inflammation so ... my rheumatologist said "You don't have Wegener's ... stop the meds, etc" and wiped his hands of me.
Unfortunately, this hasn't meant I'm all better. In fact, since weaning off the Prednisone I'm even worse than I was.
My nose is giving me the most grief. It's like a giant scab on the inside of my right nostril. I can't even touch it. And if I do, it bleeds profusely. One day, I hadn't had a nosebleed for two days but sneezed in my truck while driving and it was like a crime scene on my hand and face. Blood everywhere.
ENT's idea? Antibacterial cream applied 3x a day. So far, no change.
I'm still coughing like a seal.
When I close my eyes it's like I'm pressing on my right eyeball (do it lightly, see that spot? That's what I see) and if I look up, there's one of those spots you get after looking into a bright light. My right eye is blurry and I feel pressure behind it.
My brain feels like it's going to explode out of my head.
My neck is stiff as can be.
I feel like I was run over by several buses in a row. I can't shake this AT ALL.
My fear is that I DO have Wegener's as that was their first inclination when my Proteinase-3 levels on my ANCA test was elevated significantly.
However, my rheumatologist (who only has a couple Weg's patients) says I only have symptoms and a blood test result. I can't be diagnosed without a tissue sample.
Should I just sit and let this go? I don't want it to get worse and every day since completely weaning off Pred ... I've gotten worse.

[drz]

You can get a second opinion or consultation exam with a Weg expert. If you don't have Wegs, and hope you don't, they should be able to give you a correct diagnosis of what you do have and what treatment is needed to make things better. It doesn't sound like you are there yet.

[annekat]

I think you should get more opinions, if you can. Maybe you could try the specialist at the UCSF Med Center, I think her name is Sharon Chang, or something close to that. She is on the VF list of vasculitis specialists. Since they didn't get a conclusive biopsy from your lungs, I wonder if they could get one from that scabby thing in your nose! The way that you are feeling, someone needs to put more effort into this. And if stopping the meds makes you feel worse, maybe someone should authorize your continuing to take them. If someone is going to "wipe his hands" of you, it seems he should make an effort to refer you to someone who might have a more informed perspective. Having couple of WG patients doesn't make him an expert or even the least bit qualified to diagnose and treat the disease.

[chrisTIn@]

I can't be diagnosed without a tissue sample.
Should I just sit and let this go? I don't want it to get worse and every day since completely weaning off Pred ... I've gotten worse.

My tissue sample got back negative for Wegs, still it's 99% sure I have Wegs, said the experienced Weg's-doctor that I consulted. It was not him that did the biopsy, it was the ENT at my local hospital.
It seems to be very difficult to get a good tissue-sample, I was told.
Good luck with continuing to search for the right diagnosis and treatment.
Don't give up, and keep us posted please.

[Psyborg]

Please get a second opinion if at all possible. The likelihood of all the symptoms and the elevated ANCA not being Wegs seems pretty remote to me...and getting good biopsy's are frequently difficult...which if he knows Wegs he should know.

[KimH]

Hi, I too at first did not have a positive biopsy but had all the other symptoms of sinus wegs. My rheumy did treat me with the methotrexate and prednisone and Bactrim as he continued to test and scan me looking for something to biopsy. Well this February they found a big mess in my left sinus, granulomas and necrotic bone. I am now on Cytoxan, slowly lowering the pred and being treated for osteomyelitis ( bone infection). That's another long story and many more questions need to be answered in that regard. I agree with the others that you need to find a doctor that will seriously look into the wegeners and treat you so you feel better and can begin to recover.

[Alysia]

Hi Nikki,
I was thinking about you and wondering what is going on with you.
did you finish the other treatment that you had to do ? (if I remember well...)
what you describes, sounds to me like WG.
I had 2 false negative biopsies from my nose (which became saddle) and I definitely have WG. I did a little "internet research" and found that positive C-ANCA is indicative to WG (and Krohn disease).
find yourself a good WG doc. maybe someone here can give you names.
good luck and take care of yourself.

[NikkiNicole]

Thank you all for all your advice. I am going to be calling down to UCSF. I have all her information at home. We just moved into a new house and are hoping the sinus crud goes down because the old house had very poor ventilation.
I was truly hoping they would see me down at UCSF. I'm at my wit's end with everything being brushed off.
"Oh your ears are muffled cuz the tube is coming out" OK ... so I'm going to be just as muffled as I was before the tubes went in? Great.
"Your cough is nothing, you lung is clear now" Um, I'm almost choke I cough so much. So thanks.
"Your frequent bloody noses are just from your inflamed septum and prominent blood vessels in the front of your nose." So I do have inflammation? And giant blood vessels I hadn't had before in 33 years of living??
Looks like I'll be headed down to the city for the day! (well, not today. Today I'm working!)

[Dirty Don]

Hang tough NN...you're right on track, just gotta get some of those docs to listen and act...sometimes they just don't get it that we know our bodies best, not them just because they read in a book, sheesh. Not only the poor ventilation, but also the stress of moving can be affecting you...WG reacts to stress quite well...er, powerfully. Wish I was in the 'city' with ya, greatest city in the world...for me anyway. Spent lots of years wandering the alleys...LOL! Take care and fight back!!!!

[annekat]

I have great early childhood memories of San Francisco. We lived on the same street as the UCSF teaching hospital and my dad, probably an intern or resident at the time, walked up the hill to it each day from our house. So I hope you will be making that same trek soon, Nikki! I can almost guarantee, from what I've heard or read, that no one will brush you off and you will be taken seriously. If you have any sort of crisis between now and then, maybe just try showing up at the ER there and see what happens! I am anxious to hear more about Dr. Chang and people's experience with her, since I might want to see her someday, even though I am 700 miles away!