New member. 57 years old. expecting the best

[AngieB]

My case seems so weird and I feel guilty it is so mild right now compared to things I read. Never the less, I know knowledge is power and I am ready to get on with this. God told me to relax and get ready because I am not ultimately in control. Although I am still reading and learning. I worked in pharma for years and forget I'm not a doctor sometimes. But trust me, I'm not. I have had this weird crusting nasal polyp situation in only the left side for 12 - yes 12 years. I have been endoscoped by our University teaching hospital at least four times over the years for the same lesion. They encouraged a biopsy in 2007. Told them I couldn't - my daughter was getting married and I had no time for such. I actually scheduled it for 2013 but we had a 1" snow storm (deep south!) The pressure and aching of the lesion in that one spot continued bothering me so I agreed to biopsy on June 25 this year. The pathology report came back positive for GPA - (weg). But all and I repeat all other bloodwork was relatively normal except CRP was 32. Proteinuria was 1 point over as well. All 4 ANCA tests were negative. I have the first appointment of my "Wegener's career" on Aug 13 with Dr. Villa Forte at CC. Looking back there maybe have been a few little signs, transient ringing in ear or buzzing - hard to explain. Vasculitis rash on feet when I walked 10 miles at Disney World. But I dont know. Do you have GPA diagnosis from biopsy alone? I do get a little tired. But overall, I feel so good I am at this point more afraid of the medicines than the disease. I have completely changed my diet - trying ALL raw fruits and vegetables, nuts and salmon. I've added a bunch of herbs and vitamins for good measure. I'm thinking of getting my silver fillings removed, curiously the only ones I have are adjacent to the sinus with the problems. Is dental work risky for someone with vasculitis? So much I just don't understand yet. Love to all of you fighting!

[Pete]

Welcome to the club, Angie! You're starting to ask the right questions. Write your list of questions and take it with you when you see Dr Villa Forte. I think you'll love her!! She's been treating me since July 2012. Always takes the time needed to fully answer my questions and explain her treatment plan.

Where in the "deep south" are you from?

[AngieB]

in Alabama.

[Pete]

in Alabama.

I was stationed at Ft Rucker (SE Alabama near Dothan) in the mid 60s.

[Dirty Don]

Welcome AngieB, you're on the right track for sure...just a tough track to be on! Much of my WG damage is in the sinuses. Therefore, when the prednisone helped destroy the last of my teeth, I needed replacement. Because the sinuses were the 2nd worst affectation, doc felt false teeth were better than risking an infection where the posts would have to go. Anyways, welcome, follow protocols, be patient, and keep on keeping' on!

[BenHornsby]

Welcome Angie ;-)

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[Masha]

Welcome Angie. I can identify with you. For years I had sinus problems. Unfortunately, misdiagnosed and I had six, yes 6 sinus surgeries. In the late fall of 2016 I was diagnosed with Wegeners. My first treatment was Methotrexate, folic acid and prednisone. During 2017 I had plenty of dental problems, oral surgeries, extractions and implants. By the fall of 2017 I started Rituxan infusions. My second series of infusions were in the spring and I will be going back this fall. I lurked on this site and never joined until winter2018. Wish I had sooner.
Since you are scheduled for CC I would say to address your dental questions there. From this site I have picked up several helpful ideas. First, I purchased a Sinu-pulse machine. It is absolutely great. The other thing I do is take Mucinex Nightime. My sinuses are clear, no bleeding or crusting. As I decrease my prednisone I have some sensitive mouth issues. We need to be very careful about catching, colds, coughs, flu. Those definitely trigger a flare for me. So we keep our hands clean and away from our face. I know all of this is simplistic, but these few small things are a big help.
I did panic last year when a hole in my nasal passage developed. The people here shared their saddle back nose stories with me. We walk a fine line from being paranoid vs. living as normal as possible.
Don’t hesitate to ask us questions. So many wonderful people have been here for me.
Masha

[me2]

Welcome Angie. You will find lots of support and information here. Biopsy not only does work for diagnosis it is the gold standard. There is no better confirmation than biopsy. For those who do not have a positive biopsy it is a tough road trying to confirm the disease identity. So ,for you, it is a good thing to have. It is not uncommon to have negative ANCA tests. I myself have in 40 plus years never had a positive ANCA. It is not even used with me any more. It is not a good tool for some people.
I used to be more afraid of the drugs than the disease too. I thought maybe I could influence the disease with diet , herbs and other natural treatments. I failed in this. What I DID do was cause myself a LOT of extra suffering that could have been avoided by following what is now well established protocols for treatment. In my defense, this was not the case 40 years ago. Still, I wish I had followed conventional treatments and used herbs and diet to support those. It also would have been great to have a world class Dr like Dr Villaforte. I met her many years ago at a WG conference in Kansas City. There was no internet back then and I had to travel to get knowledge. Dr Villaforte was very kind and generous with her time in helping me. She is well respected in the WG community. You are in excellent hands.