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View Full Version : Another new member to site, but 2 Year WGer



Rodger
09-23-2008, 11:45 AM
My name is Rodger and I just registered on the site on 9/12. I've just passed the second anniversary of my diagnosis.

It started in May/June 2006 with what I thought was an allergy induced cold. I tried to ignore it because my wife and I with some friends were Italy bound. The whole trip I had sinus symptoms which I treated with over the counter decongestants and good Italian red wine ;). By the time we got back home on July 3rd, I had decided that I had a bona fide sinus infection and I headed to my general practitioner. Over the next 6 weeks we tried several antibiotics but the GP kept saying, "it's probably a virus." Despite the fact that my nose was visibly swollen and I could not sleep because I could not breathe. At my wits end, I got into see an ENT.

They were stumped but at least paid closer attention. On my 5th antibiotic on August 16th I left work early with a migraine and did not go back full-time until Nov. 27 of that year. I had a few episodes of shortness of breath and racing heart beat in this time frame.

At this point my ENT was really paying attention, she had mentioned surgery and something called Wegeners in passing, but did not think my CT looked that bad. However she sent me to an infectious disease specialist to decide if IV antibiotics were in order.

This was the turning point, I started a broad spectrum IV antibiotic while they started cultures. She quickly determined I had a Pseudomonas infection with no idea why an adult would have Pseudomonas in his sinuses. They changed the IV, which meant home infusions. The ID doctor still wasn't happy and without telling us her suspicions she ran the ANCA blood tests. By this point, my ENT said surgery was a must. The day before surgery, while I doing pre-op consultation with the ENT, word came from the ID doc to do a biopsy for WG. My ENT was kicking herself, but was furiously printing info from the internet to give me what she could.

Surgery was on Wednesday. Thursday night my ENT called me at home to say the first biopsy said WG, and they expected Mayo Clinic to confirm. On Friday when all the anesthetics and the surgical shot of steroids wore off, I was rushed to the ER with chest pains and shortness of breath. I spent the weekend in the hospital not seeing a rheumatologist despite them knowing about the biopsy results. (Aside: U.S. hospitals and the complications caused by doctors privileges not transferring from one to the other caused, my delay.) They put in a central line to help with the ongoing IV antibiotics and sent me back home.

Later that week at my ID doctor appointment, she said "here is the rheumatologist I'm recommending. I just called his office. Go now. I'll see you next week!" By that evening I was on Cytoxan and prednisone. Thus started my real treatment.

By that point, I had developed the WG's ski-slope nose. I had just avoided lung manifestations; the one granuloma in my lungs quickly resolved itself. I avoided all the other usual spots. I lost about 40 pounds before treatment started. I ended up with one more sinus debridement before I really began show progress.

At this point, Sept 2008, I am pretty healthy at the 2 year mark. In December I was transitioned to Cellcept from Cytoxan and my ANCA has continued to improve. They also suspended preventive antibiotics at that point, which was good because of a prior problem with sulfa, I had to take Cipro for about 15 months. During that time I had recurrent bursitis in my shoulders which has abated. Although I have had a lot of joint and muscle pain of late and will discuss with my rheumatologist on Wednesday. I see my ENTs about every three months. (I acquired a second ENT at Georgetown Medical Center who had more WG experience.)

The immunosuppression has shown itself more this summer with a case of shingles in June and stubborn ear infection right now. However all in all I feel lucky to be where I am.

My treatment routine right now is: 2000 mg of Cellcept daily, 10 mg prednisone every other day, rinse my sinuses 3 times a day, use Ponaris nasal emollient nightly, topical mupirocin ointment on my nostrils twice daily, and now because of the shingles one dose of acyclovir daily to prevent another outbreak.

So you've heard the whole ugly story. I hope it did not ramble on and I hope it will help some of the newer patients to know that despite everything there is life after diagnosis.

I've been given the preliminary okay to talk about reconstruction of my nose, but I haven't called plastic surgeons just yet. I'd like to hear from anyone has gone that route.

Thanks building the community. Rodger

andrew
09-23-2008, 07:28 PM
Hi Rodger! Welcome!

It's hard to imagine putting up with the pain and discomfort of pre-diagnosis even after going through it but we do. Sounds to me like you're a positive person too which makes a big difference.

I had sinus infections as well but nowhere near as bad as you have experienced. I have heard of several people that have had surgery to correct the 'saddle-nose' issue. As you've obciously discovered, surgery isn't recommended until the disease is at the very least under control or better yet, in remission.

I'm unsure whether anyone in this forum has had the corrective surgery but I hope they respond here if they have.

Thanks for your introduction!

Terry
09-24-2008, 05:24 AM
Rodger, does it ever feel as it your nostrils are closing? I honestly feel like I need stents in my nostrils to shore them up. I also want to add that I am having the racing heart issue at night when I get into bed. Sometimes it feels as if it's going to burst right out of my chest for beating so hard. It also doesn't take much activity to get my heart rate way up - like walking from one room to another. Mind you, before my knees got bad, I was taking 5 mile hikes, so it's not like I'm suffering from being sedentary too long. As I said in another post, I have so many symptoms, they need to convince me I don't have it.

Rodger
09-24-2008, 05:38 AM
That is how it felt before debridement, drug therapy, now remission. At the worst I never had a runny nose, only congestion. My ENT could not see into my sinuses because of the swelling and crusting. My nose and face appeared swollen from the exterior as well. I often had nose bleeds during that time, because the vessels we so swollen.

there are a few other autoimmunes that contribute to cartilage swelling and damage of he nose, ears, and trachea. Polychondritis is one that comes to mind.