Any ideas

[Amy Marie]

Hi. My husband is getting a biopsy Monday to confirm GPA. The pulmonologist took him off prednisone for the weekend so it wouldn’t effect the biopsy Monday. He is taking hydrocodeine for the pain. He woke up today with both eyes being red, his right upper eye lid swollen and under his eye is a bit droopy. We paged his pulmonologist but no answer yet. Should we be concerned?

[drz]

Hi. My husband is getting a biopsy Monday to confirm GPA. The pulmonologist took him off prednisone for the weekend so it wouldn’t effect the biopsy Monday. He is taking hydrocodeine for the pain. He woke up today with both eyes being red, his right upper eye lid swollen and under his eye is a bit droopy. We paged his pulmonologist but no answer yet. Should we be concerned?

How did this turn out for you?

[Amy Marie]

He ended up on prednisone and it’s better. Still in the diagnostic stage . It’s really scary waiting to see the right people. Waiting on blood work, etc. I just wish we understood it better.

[vdub]

Do you have any particular questions? Many of us have been living with wegs for years and been around the block one or two times. We're not doctors, but we know a thing or two.

[Alysia]

Welcome to the forum. Sorry that we didnt answer you when you asked. It can be that the body reacts to the lack of pred with more symptoms. If you feel like, you are invited to share more.

[Susan55]

Hi Amy

I was in the same boat, waiting for blood work, CT Scan and waiting to see the right people to get an answer. For me the waiting game was worse then hearing I had GPA. Now for me it's being able to accept that I have it. I started treatment three weeks ago. Some symptoms have have gotten better (a bit) but still have pain. I am with you and wish i understood it better myself. The more I read on this site the more informed I am becoming and it feels good.
Hang in there and be strong, it's all we can do. When is your husbands biopsy?

[Jaha]

Amy,
Welcome to the most knowledgeable and caring group of Wegeners/GPA people ever. This site and the members on it have helped me, time after time, to understand this unpredictable disease. I am wishing your husband and you all the best, and hope you find the answers that he needs to get better.

[Amy Marie]

So his nose biopsy is suggestive and his c-anca was positive so they diagnosed with the extra step of redoing the nose tissue reading. Waiting on pr3 too but the pulmonologist made the diagnoses and appointments are made. Feels good to be home.

[Alias]

The positive C-ANCA was presumably accompanied by elevated inflammation markers, e.g. ESR (sed rate) and C-reactive protein. (Those are part of the standard battery of tests.) Once the prednisone tamps down the flames, I'd guess you'll be talking with your treatment team about what drug will be tried to induce remission. This is a terrible period for you and your husband, just trying to get answers and figure out what's next, while also suffering from the worst of the acute symptoms. We've all been there. Best wishes.

[John S]

I bounced around among several specialists that had no idea what I had, each treating a different symptom but no one treating the disease. it sounds like you are on the right track. My ENT did sinus surgery and said that "it looked like Wegeners" but the biopsy was inconclusive. I ended up going to the Cleveland Clinic , was examined, they reviewed all of my biopsy samples and reviewed my test results. They started treating me for GPA within two weeks.
I just had a flare and went back for treatment of Rituximab yesterday.
Does your Doctor work with Wegener's patients often? My Doctor at Cleveland Clinic works almost full time with GPA patients. Her experience shows and she has been a godsend.

[Pete]

Hey John!

Who do you see at Cleveland Clinic? I see Dr Villa Forte. I think she’s great!

[John S]

Dr. Villa Forte. She is the best. Right now she is headed to El Salvador to work for a week. I'm sure that the people there appreciate her as much as we do.