Living with tracheal and subglottic stenosis can be a challenging journey, filled with uncertainties and concerns about disease progression. In this blog post, we'll delve into the relationship between these conditions and shed light on how they may or may not track disease progress. We'll also explore the crucial role of expert care in managing tracheal stenosis caused by specific autoimmune diseases like Wegener's Granulomatosis (WG).

The Disconnect: Tracheal and Subglottic Stenosis vs. Disease Progression

Contrary to common assumptions, tracheal and subglottic stenosis do not necessarily align with disease progression in autoimmune conditions. Personal experiences reveal that even when inflammation results and other indicators improve, scar tissue can still reoccur around the subglottis. The absence of symptoms does not always guarantee the absence of stenosis.

On April 6, 2023, I received a diagnosis of GPA (Granulomatosis with Polyangiitis) after undergoing a lung biopsy. This diagnosis came after a lengthy journey that began in 2010 when I was treated for Giant Cell Arteritis. Despite experiencing symptoms and seeking medical attention, it took time for my doctors to identify the root cause. Throughout this period, there were instances where tests and follow-ups were delayed due to various factors, including the challenges posed by the COVID-19 pandemic.

Has anyone come across cases of heart damage associated with RTX treatment? I recently heard about an individual receiving RTX for cancer who experienced heart damage as a result. Due to concerns about potential heart damage or even the risk of a heart attack leading to death, my rheumatologist has ordered a heart evaluation for me, particularly considering certain preexisting heart conditions I may have.

I had my recent RTX infusion last Wednesday, and it went smoothly. However, when I received my lab results on Friday, I noticed a +2 leukocyte count in my urine, indicating a possible UTI. As a man with a urethral stricture caused by being catheterized as a baby, UTIs are not uncommon for me.
I'm scheduled to get a urine culture tomorrow to confirm the presence of an infection. However, I'm concerned about the potential interaction between antibiotics and RTX. If I do have a UTI and need to take antibiotics, could they adversely affect the effectiveness of the RTX treatment? Unfortunately, my local rheumatologist is currently on holiday, so I will be consulting with the on-call doctor who may not have a definitive answer.

I had my recent RTX infusion last Wednesday, and it went smoothly. However, when I received my lab results on Friday, I noticed a +2 leukocyte count in my urine, indicating a possible UTI. As a man with a urethral stricture caused by being catheterized as a baby, UTIs are not uncommon for me.
I'm scheduled to get a urine culture tomorrow to confirm the presence of an infection. However, I'm concerned about the potential interaction between antibiotics and RTX. If I do have a UTI and need to take antibiotics, could they adversely affect the effectiveness of the RTX treatment? Unfortunately, my local rheumatologist is currently on holiday, so I will be consulting with the on-call doctor who may not have a definitive answer.

I've recently been prescribed Cyclophosphamide (Cytoxan) pills to address my hearing loss, following what seemed to be an ineffective Rituximab infusion (two infusions, two weeks apart) in March/April 2021.

My doctors believe that another round of Rituximab would take too long to have an impact on my hearing, as it typically takes 6-8 weeks to take effect. Given my recent sharp hearing loss in my left ear, they have opted for Cyclophosphamide instead.

If anyone has experience with Cytoxan, I would greatly appreciate hearing about your journey with this medication. I'm aware of the possible side effect of bladder cancer, which does concern me.

Today, I had a meeting with my pulmonologist to discuss an ongoing issue I've been experiencing for the past nine months. I've been struggling with increasingly difficult coughing episodes, where the congestion seems to be thickening and occasionally blocking my airway. Initially, I didn't associate it with my Wegener's Granulomatosis (WG) since I'm already on MTX, Prednisone, and Fluticasone (nasal steroid).
To my surprise, my pulmonologist suggested that if a culture doesn't show any bacterial presence, a bronchoscopy may be necessary to investigate a possible bronchial stenosis. I've already undergone two bronchoscopies in the past, so I expressed my anxiety about the procedure. Being awake while tubes are inserted into my throat with only numbing agents isn't a comfortable combination. However, my doctor reassured me that he would personally perform the procedure and ensure I receive heavy sedation. A relief, indeed!

I wanted to share my experience with my first dilation procedure in case anyone else is facing a similar situation. I was quite nervous beforehand, but as it turns out, there was really no need. I went to the theatre at 10:15 am and by 12:30 pm, I was enjoying a sandwich and some ice cream. My throat felt sore, and I had to wash down each bite with some tea, but I managed to eat. The doctors mentioned that my subglottic stenosis was only grade 1, so they opted for a dilation instead of using the laser as a more conservative approach. They did mention that I might need another dilation in the future, but the timing remains uncertain. I have a follow-up appointment in three months to monitor my progress. Hopefully, this dilation will last for a while, but if it doesn't, I'm not bothered by the idea of having another one. Fortunately, I didn't have to stay overnight at the hospital, and they allowed me to go home as long as someone was with me for the next 24 hours.

I'm currently experiencing a flare-up in my airways, which has been a recurring issue for the past four years of my illness journey. During this time, I've undergone one surgery and had two previous flares treated with prednisone, which I'm currently taking. Initially, my Wegener's Granulomatosis was managed with cytoxan, followed by seven years of treatment with imuran. To address persistent joint pain, methotrexate was added to my regimen. Since 2006, I have been on imuran and methotrexate, reserving the use of prednisone for flare-ups.
Recently, I had a lengthy conversation with my former doctor, who reached out to check on me after seeing my clinic records (how thoughtful!). We spoke for about 45 minutes, which is unprecedented in all my years of being unwell. During our discussion, I inquired about her perspective on whether I have ever truly achieved full remission. I often feel like a sputtering volcano, never quite settling. In response, she mentioned the potential of rituxan but admitted uncertainty regarding its effectiveness in addressing airway involvement.

I recently moved to Atlanta and find myself in a bit of a medical conundrum. I may or may not have Wegener's (I received a diagnosis previously, but the director at the Vasculitis Clinic at UCLA, where I sought a second opinion, acknowledged that my case is complex and requires close monitoring with frequent bloodwork).
I've come across some older posts inquiring about Atlanta doctors with expertise in Wegener's or those open to collaborating with out-of-town Wegener's specialists. Unfortunately, I couldn't find any conclusive answers, so I'm hoping to get some fresh ideas from you all.

I wanted to share that I am a newly diagnosed individual, and I'm in need of a knowledgeable and experienced doctor who specializes in weight management as soon as possible. The diagnosis has brought about a heightened sense of urgency for me to address my weight-related concerns and make positive changes to improve my overall health and well-being. Finding a skilled weight management doctor who can provide guidance, support, and a tailored treatment plan is crucial for me at this stage. I understand the importance of taking proactive steps towards my health, and I'm actively seeking out a healthcare professional who can assist me on this journey.

I'm Lynda, and I'm thrilled to be joining this community. I wanted to say a big hello and express my gratitude for welcoming me here!
My journey began in April 2021. After receiving the second Moderna vaccine, things took an unexpected turn. Along with the itchy and painful arm rash that I experienced after the first dose, I also developed a frozen shoulder and a 3.8cm mass in my left lung. It's worth mentioning that I've never smoked, but I do have allergies. My pulmonologist discovered the mass by chance, as I had a CT scan of my lung back in June 2020 for a persistent cough, and everything was clear. However, during a follow-up CT scan in July 2021, the mass was detected. In addition to the mass, I was dealing with pain, insomnia, sinus problems, nosebleeds, extreme fatigue, and unexplained weight loss (about 8% of my body weight).

Hey everyone,
Just wanted to give you a quick update on what's been going on with me. It's been a rollercoaster ride for the past 16 months, but we might finally be getting closer to a diagnosis. It all started in winter 2020 when I suddenly had this annoying post-nasal drip, congestion, and cough that just wouldn't go away. The timing couldn't have been worse with COVID wreaking havoc in the medical field, so it took me a whole year to go through the usual doctor visits…

Wegener's Disease, also known as Granulomatosis with Polyangiitis (GPA), is a rare autoimmune condition that affects the blood vessels, lungs, and kidneys. Early diagnosis is crucial for effective management and improved outcomes. In this blog post, we will provide a comprehensive guide on how Wegener's Disease is diagnosed, including the common symptoms, diagnostic tests, and the importance of consulting with medical professionals.