Hello Everyone!

[rmeister29]

Hello, My name is Randy and I'm from Loveland Ohio (suburb of Cincinnati,OH). This week I was diagnosed with GPA and so far, I'm still not sure how to feel. I'm 39 years old, in pretty good health, rarely get sick and have been somewhat blindsided by this diagnosis. In short, it started with sinus infection, moved to my ear, got an ear tube, had some relief then was put on steroids. That helped but my ENT noticed my nose continued to stay inflamed so he immediately ordered a Chest X-Ray, CAT Scan and round of blood tests. When results came back he said based on the ANCA level and lack of response to other common sinus relief he felt it could be GPA. He said he was by no means an expert and recommended another doctor. I thought that was a very wise decision and commend him for that. So a visit to the other doctor, severel more tests and finally, a biopsy of my nasal area this week and the diagnosis is in. The biopsy was positive for GPA. So, I have an appointment Tuesday with both doctors to discuss my diagnosis and treatment. I'm looking to this site for information and support as I go through this journey with what seems like a very small community. I'm hoping you all are doing well with your journey and thanks you all in advance for the support and info. I'm hoping it will help me better understand what is going on and what I need to expect and get ready for.

[Pete]

Welcome to the forum, Randy!

Hope the treatment plan your docs develop works well.

Your experience sounds similar to mine. I was in good health at age 64 when I started showing symptoms that didn't respond to antibiotics. After a week at OSU, I was diagnosed. About a year in, I found this forum.

I see a Vasculitis specialist at Cleveland Clinic twice a year. She got me into remission and has maintained it. My health is pretty much back to what it was before I got sick.

One question you may want to ask your docs is how many Vasculitis patients they see. If it's just a few, you may want them to either consult with a specialist or refer you to one. Cleveland Clinic is the nearest Vasculitis center of expertise/excellence to you. If you want names of Vasculitis specialists at Cleveland, here are two: Alexandra Villa Forte, MD, (I see her - she's wonderful) and Carol Langford, MD (several folks on her see her and give glowing reports as well).

Feel free to ask questions, ask for advice, or just vent when you're frustrated. There's someone on her 24/7/365 to respond to you.

Good luck and keep in touch!

[rmeister29]

Pete,
Thanks for the response! I have considered Cleveland Clinic and still have it on my mind. Thanks for the advice on the Vasculitis question. I will be adding that to the list of questions! Also, thanks for the names of doc's. If I go that route it will be good to have these. Still pretty confused by all of this but I'm in a positive mode as of now. My mother has had cancer twice and is a very strong woman so I have a great example in how to respond to such things as this but at the end of the day, stress and venting will be inevitable so I'm sure you will see some of that from me. Thanks in advanced for listening!

[Debbie C]

Hi Randy and glad you found this forum but sorry you had too. You will get some great advice on here. I also live in Ohio ( Youngstown ) and I too go to the clinic. I see Dr. Carol Langford.But like Pete said they are both good and by the time you are thru with this you will probably have a list of drs. to see since these disease can effect any organ in the body.So again it is IMPORTANT you find a dr. that knows of this disease. The most common treatment at first is ctx (citoxin ), prednisone, and maybe Bactrim and fosomax.There are other treatment plans but I'm sure you drs. can get you on the right path. Good luck with your appts.

[renidrag]

Welcome Randy, as you can see there are caring people here. Advice given is spot on and you have a lot of friends that will check in with you soon. I remain in remission since 2010 with just a blip last year.
Dale

[whatthewhat]

Wow, kudos to your ENT! As diagnosis stories, go, this one was a heart-warmer, although that sounds ENTIRELY innapropriate to say to you as you get used to having a diagnosis at all! Anyway, welcome to the forum - it's an invaluable resource for me, and I think you will find it helpful too.

[rmeister29]

Debra,
Thanks for the info. My current Doc did mention Dr. Langford and her work with the disease. I'm definitely considering a visit to her. Thanks again for the treatment info. I'm arming myself with as many questions as possible for my next appointment and this will help a lot!

[annekat]

Welcome, rmeister! I think that both of your ENTs did a great job in getting you dx'ed in a timely manner before the WG started causing a lot of damage and appearing in other areas of your body. It still could, but getting treated early will slow down and even stop the progress of the disease. You may have relapses, of course, but getting it under control initially is important. The above advice to be seen at the Cleveland Clinic is a good one, but your local docs should at least be able to get you started on appropriate treatment. You wouldn't want to wait on that. As for the CC, my sense is that Dr. Langford is the most well known doc there, which makes me wonder if it might take longer to get an appt. with her. Such good things have been said on here about Dr. Villa Forte that I would have no hesitancy about seeing her, especially if I could get an appt. sooner. But I am on the west coast and can't travel to Cleveland. So, you are lucky to be in the position you are, though I'm sorry you have gotten the WG diagnosis. Remember that a lot of us on here are doing quite well since treatment, and that there is every reason to believe that you will, too. Keep in touch about how things are going and what treatment is decided upon. We are interested, and we care!

[jakekell]

I also see Dr. Villa-Forte at CC. I drive from Michigan as I found out the hard was that I had to go to the best docs for WEGS. Good luck, hope they caught it early and you do well.
Mary

[LCL2013]

Hi Randy,
This is actually my first post in the forum. I've been lurking for a long time. Your story sounds almost identical to mine. Almost two years ago to the day I started having sinus issues. We had just put in vegetable and flower gardens and I actually thought I had all of a sudden developed allergies. Something I had never suffered from before. After more than one round of antibiotics, and my symptoms only getting worse - I couldn't walk, talk, and breath at the same time due to tracheal stenosis, and my ears were so full of fluid I couldn't hear people unless I was less than a foot away from them - I finally got disgusted and made an appointment with an ENT. He took one look at my ears and nose, ran a camera down my nose and told me he thought I had Wegener's. He referred me to a local Rheumy, but they couldn't see me until December. Of course, I immediately started Googling everything I could about the condition, and from what I was reading on the disease it didn't seem wise to wait more than 3 months for an appointment so I contacted another local Rheumy doc who was retiring. He confirmed the WG diagnosis and started me on treatment. Unfortunately, his treatment methods were a little out of date, and after one month of treatment I was seeing NO improvement. A co-worker suggested I contact the Cleveland Clinic so I called them and they were able to get me in the VERY NEXT WEEK! I was initially treated by Dr. Atul Khasnis, but he left CC in March and I am now also under the care of Dr. Villa Forte. She does not communicate as quickly nor as often as Dr. Khasnis did, so I am reserving judgment on her...but hoping all of the positive experiences others have had with her carries forward to me as well. :wink1: Like jakekell, I too found out the hard way the importance of having the BEST WEGS doc handling your treatment.

I'm sorry you're going through this. I know the drive to the clinic in Cleveland can seem daunting, but the peace of mind that comes with knowing you're under some of the best care in the country is invaluable. Good luck and let us know how things go!

[MaxD]

Randy (and LCL2013) - you're very fortunate to have well informed ENTs who knew enough to suspect and test for Wegeners. I started out with identical symptoms, had ear tubes, antibiotics and finally steroids - but neither of my ENTs suspected Wegeners and it was detected only after other symptoms appeared. However, quick treatment under consultation with a recognized expert is a MUST. Rituxan has worked very well for me and there was a study that showed it works well against sinus problems. It is also not toxic unlike the chemo drugs (cytoxan and methotrexate) and side effects (at least in the short term) are negligible. Best to read up all you can beforehand and ask your docs plenty of questions in deciding your course of treatment. Good luck!

[jakekell]

Randy,

The drive is so worth while after what the Rhemy that doesn't know about wegs put me threw. I love Villa-Forte she is so good. I think she is a little slow to respond, however that really didn't get slower until Dr. Khasnis and Dr. Hoffman left so...she has a heavier load. I feel blessed to have found her as I was going down hill fast. I have had wegs about 9 years now, but my first rhemy left me with a really bad doc.

I hope it all goes well for you this is quite the journey we are all on.

Mary