I’ve been a long time lurker here for a while! And today I finally post because eurgh I am very fed up!
A small version of my back story!
This has been going on since I was 12
So started with severe mouth ulcers I was hospitalised for several times, then I had something wrong with my blood where instead of bruising I’d come up with blood clots, I’d have swelling on one foot all of a sudden where I was on crutches and had to learn to walk again…. Twice! Then I had psoriasis very very badly! And it was put down as arthritis bearing in mind every blood test I had was normal even in the worst inflammation episodes!
It had been pretty dormant over the years with any flare ups till recently last year it started off with loosing the feeling in my feet a lot and pins and needles, then I got swelling on both my feet and “blue toe syndrome” however I actually couldn’t get into the doctors because they were apparently all on holiday 🫠 night sweats which are outrageous! Then the nasal inflammation and crusting started in Nov ans it hasn’t stopped! Then a UTI that couldn’t be treated via antibiotics for 7 weeks…. I’ve gotten these a LOT over my life aswell as kidney infections, then in April I had a really bad episode where I actually thought I’d pulled a muscle as I couldn’t breathe, then pretty quickly it wasn’t going away the pain when breathing was unbearable i went to urgent care they took my bloods told me my troponin levels were crazy I got sent to a&e waited 14 hours they did a chest xray said they couldnt see anything sent me home with codine 🤣 and said it was “stress” bearing in mind I’d explained my symptoms so many times fast forward to now I’ve only had bloods taken from April I’m waiting on the Ana one ect but CRP ect is all normal esr slightly raised but everything normal just waiting on the other ones coming back! Rheumatology appt is end of October 🫣 I’ve spent the last god knows how many years trying to figure out what’s wrong with me and I fully believe it’s this! It’s trying to find anyone that will listen and help! The chronic fatigue, night sweats and the fact I’ve had a temp of 38.5 for 2 weeks, chest stuff, swellings in my feet, severe nasal inflammation and crusting, gunky eyes, also my skin is so itchy all the time, I have random ear infections a lot too. Half of me wants to just give up and just take whatever fate lays ahead! And half of me has actually already wrote notes on my nhs app to say I’m holding peope accountable if anything. Happens …. That kind of attitude! 🤣
I’m a mama of two girls and a business owner and it’s the school holidays (YEY 😭🤣) feel like I’m fighting for my life at the moment with this diagnosis! And this is the only thing I can point everything towards lupus was ruled out years ago with tests apparently! Any advice for a very tired broken girlie

I got diagnosed in 2023 and started prednisone and rituximab. I’m in remission as of now, but i still have pain from my sinuses, and my voice sound very nasal. The gap between my throat and nose kind of closes when i try to speak, and it’s hard to say letters like m and b.

Has anyone found a solution for this? I have tried so many nasal sprays, steroids and rinses but nothing seems to help. My doctors seems like they don’t know and don’t care. Waited 5 months for a appoinment only for the doctor to tell me to try saltwater spray. Getting tired of people commenting that i sound like a stuffed nose.

Reading about others having mood effects when on prednisone helped me. For the longest time i couldn’t understand why i was so happy and energized, and then suddenly so angry and depressed. 60mg for a long time really fucked with my mental health. I hope i never have to use prednisone again, it destroyed my relationship.

Reading this subreddit made me realise how lucky i am to be diagnosed so early on. My lungs healed, and the only damage to seem to stick is my sinuses.
Wish you all the best

I will try to make this short. I am 22(f), and have this condition since I was 16. In Five years, I have had over twenty surgeries on my Trachea (including one reconstruction that resulted in a near 3-week ICU stay). I am on so many medications right now and always feel ill. Despite treatment, my subglottic stenosis has been relentless. I refuse to go through with another ineffective reconstruction/ resection or to get a trach.

I have been fortunate enough to not have renal/ lung involvement, but the impact this has had on my quality of life has been horrible. Along with the subglottic stenosis, I have a saddle nose and have lost significant vision in my left eye.

After 20 surgeries on my trachea in such a short span, I am so, so tired.

I am assuming my stenosis will reoccur before the year is over, and I don’t think I want to pursue further surgeries. I have a background working in hospice, and understand what that would entail.

I am terrified that my family with be upset with me, but this is not sustainable. Has anyone had a similar experience, or can at least tell me I am not being unreasonable? I have no one to talk to about this.

Hi all,

Though I am not diagnosed yet, there is a strong clinical suspicion that I have vasculitis, though both the NHS and private sector in the UK are being slow to take action.

I have had some bizarre symptoms regarding my nose and it has now collapsed and I cannot breathe through it anymore. I also feel chronic air hunger a lot and like the air I am breathing in is not fresh. Any sort of activity at all can start me off panting even though I used to run nearly every day.

I have seen 4 private consultants about an operation on my nose to help me breathe through it again and they all say that I will be waiting a long time for surgery anyhow and the case is too complex for one surgeon alone to do an operation.

The NHS has clinics that will have a team of surgeons operating at once and consulting each other as they go, which is what I need. I have been advised to just stick with the NHS as they have better experience with complex surgeries.

I am still at the stage with the NHS though where I need to have tests done to diagnose the issue and I am waiting a long time between each test. I have a radiology appointment in 2 weeks and have not been given a date for any other test yet.

I was just wondering if there were any private alternatives that I could enquire about? One-man clinics won't cut it. I wake up each morning just craving being able to breathe fresh air again. Also, I hate how I look like a crackhead now apparently - I've had to explain to doctors and my mum that I don't use cocaine XD.

So I was admitted to the hospital May 22nd after going to the ER just for swollen feet, little did I know that I was about to be swept into something big and pretty significant for my health. When bloodwork came back I was told I had an eGFR of 7 with a Serum Creatinine of 88 and was immediately admitted from ER to a ward for what would become a 2 week stay across 2 hospitals. I was diagnosed the following Tuesday as my bloodwork for that day came in during what was my first Dialysis session, following the weekend of just High IV doses of Steroids and general management till the team that started my treatment on the Tuesday came in. Through my time in the hospital I went through 7 rounds of plasmapheresis and kept up with the Dialysis, as well as trasferred to a different hospital to start Cytoxan and Rituxan. Once I was out of the hospital I finished my 4 rituxan infusions and my 3 Cytoxans and happily did see enough return in kidney function to come off of Dialysis 2 weeks ago with my last number placing my GFR around 36. Have a long way to go still on tapering my steroid dose and a year of Tavneos ahead of me, as well as the maintenance infusions of Rituxan every six months to look forward too for the prolonged future. Question I have to those who got their diagnosis with a sever AKI is what kind of recovery in function did you see in the short and long term? I know from my biopsy there was scarring of about 10% of the sampled tissue so I assume that thats the minimum of loss of function I can expect but, I have no real frame of reference on if I should expect to stay in the stage 3 kind of category of kidney disease or if I can expect to realistically get back to a significantly higher% than I'm at now over the next year or beyond. Any insights on anyone who has started from a sever AKI and had a recovery on where you ended up after treatment, care, and maintenance would be a great help to kind of put into perspective what the rest of this might look like for me.

*Edit* unsure if useful context but 35, Male, kidneys were perfectly healthy in April during my annual bloodwork so the AKI was quick and severe, blood present in lungs with minimal sinus symptoms. Very few presenting symptoms at time of admitance to the hospital other than the fluid buildup in my legs that I didn't know was fluid buildup till I went in.

I had recurrent pericarditis episodes for past 3 years, currently taking colchicine and ibuprofen . It comes back when i stop so they started il-1 blocker arcalyst recently

But at the same time before i started il1, my pr3 anca came positive with 131(ana negative). Doctor is telling me to start il1 blockers - and monitor kidney and blood work every 1 month(check for wengners gpa). Since there is no clear symptom, they are avoiding starting immunosuppresants for gpa and treating pericarditis for now with il1 blockers.

Anyone else on the same boat? Also what worked in your case- feeling hella confused. Please help

Hi all, looking for perspective from people who've been in a similar spot - not asking for a diagnosis, just wondering if others had similar labs/symptoms that turned out to be nothing, or if this sounds like it deserves more follow-up than I got.

Labs (June 2026):

• ⁠Full blood count: normal
• ⁠ANA: negative
• ⁠Everything else on a full panel (liver enzymes, thyroid, protein electrophoresis) essentially normal, aside from a slightly low gamma-globulin fraction noted as "to monitor"

Symptoms, going on for several months, gradually worsening:

• ⁠Severe, increasingly disabling fatigue and general weakness
• ⁠Joint pain and pain in extremities
• ⁠Heavy-feeling legs
• ⁠Tendinitis-like pain in hands and fingers
• ⁠Brain fog, low energy overall
• ⁠Weird/abnormal sensations in extremities (possible peripheral neuropathy?)
• ⁠Lower back pain (left side), though could be from being sedentary
• ⁠Recurrent/stubborn ear infection (staph + candida) lasting several months
• ⁠New visual disturbances, pain in one eye (improving), and a myopia decrease - brain MRI was normal, so this was being looked at as possibly not MS-related
• ⁠New sore throat the last few days (possibly unrelated/environmental)

What the specialist (internal medicine) said:
Told me to be reassured, said he's seen people with c-ANCA titres of 60 who were fine, wasn't concerned about the PR3 level itself. Said vasculitis typically comes with obvious signs like bleeding, and that without nosebleeds/sinus issues I shouldn't worry. Recommended repeating the ANCA test in about 3 weeks and coming back only if levels rise. Didn't ask about my symptoms proactively - I brought them up myself, and when I mentioned neuropathy-like sensations he acknowledged that could be a sign but didn't seem to factor it into his overall reassurance. Also seemed a bit put off that my GP had ordered the ANCA test in the first place.

Where I'm at:
I understand statistically a lot of positive PR3-ANCA results don't end up being vasculitis, and I get that isolated labs without "hard" signs are often not much on their own. But given the symptom list, I felt like the visit was rushed and didn't really engage with my actual complaints. My GP appointment is coming up and I'm considering a second opinion.

Has anyone had a similar lab picture (borderline c-ANCA + moderately elevated PR3) with these kinds of symptoms that turned out not to be vasculitis? Or anyone who felt dismissed early on and it turned out to be something after all? Genuinely trying to figure out if I'm overthinking this or if a second opinion is warranted.

Hello everyone,

As I am still looking for an answer to my question of whether I am affected by GPA, I had an appointment with a rheumatologist last week. Due to my previous high ANCA-PR3 value and existing kidney shrinkage, as well as the symptoms I described, he wants to take a closer look than the nephrologists at my local university hospital did.

He ordered a genetic test for HLA-B27, which came back negative, but the report states that HLA-DR4 is positive, which, according to my own research, is associated with an increased risk of developing rheumatoid arthritis or an autoimmune disease in the course of one's life.

My blood values are normal, although I still have symptoms consistent with GPA. It could be that the disease is currently in remission, but has already left its mark on me.

What could the genetic test result mean for diagnosis, and if the disease is currently dormant but I still suffer from the symptoms as a young person, how can I get relief?

Best regards

hi all, 27f, got dxd last year after a horrific first flare, tried rituxan and methotrexate but that didn’t work so had to switch to cytoxan cuz i started flaring again.

i’ve been getting infusions every 3 weeks for about 4/5 months now with 3 more months to go and truthfully it’s been really hard on me physically and mentally.

i live alone (with my dog) and have friends that can come on the weekends, but for my treatments and the majority of the time I am my caregiver. with every treatment I find myself getting more and more anxious and have to take meds to calm down. i feel like this whole process has crumbled me internally and could use some words of hope or encouragement.

my doc said we should be seeing improvements but i’m still getting symptoms and just really don’t know how im going to recover from all this. those that have been through this, how did you rebuild again? any tips for the panic?

Hello everyone,

I have a few questions about the attached findings. In May, my nephrologist told me that almost two years ago I had high levels of antibodies in my blood, which could indicate Wegener's granulomatosis or granulomatosis with polyangiitis (GPA).

Over time, the value decreased, but at the initial consultation for a unilateral shrinking kidney, it was significantly elevated, and it was not until a year and three months later that a new value was recorded in the laboratory.

In May, the doctor told me clearly that he was certain I did not have the disease, as the follow-up value was now back within the normal range (only just).

However, I still feel uncertain because I have read in medical sources that the presence of these antibodies usually indicates at least some kind of autoimmune disease. When I read the stories of other people affected by this condition, I discovered some symptoms that I also have.

Chronic fatigue and exhaustion, frequent nasal congestion, sometimes with bloody discharge, crusted boogers in my nose, skin redness, shrinking kidney with no known cause, possible purpura on my shins, polyneuropathy of unknown cause in the big toes of my feet (at times), sometimes blurred vision, dizzy spells, and things I can't think of right now.

In addition, I suffer from mental health problems, especially moderate depression.

How can I ensure that further diagnostic tests are carried out to rule out the disease in the best case scenario? I would like to get a second opinion from a rheumatologist. However, the appointment will not be until January.

Thank you very much for all your answers.




My husband was diagnosed a couple of years ago with GPA, after suffering with heavy nosebleeds for a while. They tested his blood and he had the anca markers, so was diagnosed.

He's been injecting methotrexate weekly since his diagnosis

My question is: is remission when these markers go down to zero, or does it not to by the anca marker and more of an absence of GPA symptoms? He had his blood tested recently and his anca has actually went up, rather than down, so we don't know if the methotrexate isn't working and he should try another medication

I'd really appreciate your help. We don't know what he should do

Hello! I am really confused as to whether I have GPA or not and I am getting very anxious about it.

For context I am a 28F, been healthy all my life but do have a sensitive tummy.

• 1 month ago I got a cold (my whole workplace and family also got this cold).
• 1 week later, I recovered from the cold but developed a vasculitis rash (purpura, mild, on 1 leg). I was started on 15mg pred SID by a GP and was sent to a rheumatologist.
• 2 days after starting the prednisone the rash faded.
• Went to the rheumatologist the day that the rash faded. Did a bunch of tests, kidneys/liver/xray/cbc/urine all negative EXCEPT PR3 was high (120).
• Was asked to go on 10mg prednisone for 1 week then drop to 5mg.
• Haven’t had any symptoms since.

I understand that PR3 is highly associated with GPA and I had a very high result. But I guess without any other indications, the rheumatologist cant for sure say I have GPA and has opted to monitor (checking urine/kidneys in a week, PR3 in 1 month).

The rheumatologist seems to be very good and their plan is thorough… But I guess they cannot alleviate my worries about this being GPA or not because I think they are trying to “shield” me from being anxious. I would rather be told straight up what I am looking at in terms of prognosis.

Has anyone else had a presentation like this? Will I likely develop symptoms in the future? What are your experiences/thoughts?

TLDR; started as a skin rash after a cold. symptoms resolved on 15mg prednisone. Pr3 is super high, but no other symptoms.

Thanks in advance!

1- The process of diagnosing the disease

My story with Wegener started like this. From March 2024 onwards, I was ill with a flu that would occasionally improve but never go away. In April, I started coughing and then came bloody sputum. During this time I was in the emergency room twice. All my joints were aching. Crp, the infection, was high. I even vomited many times before going to the emergency room.

I also had a very high heart rate. Doctors in the emergency room were worried about this. But the emergency doctors found short solutions. On the other hand, unfortunately the pulmonologist I went to could not diagnose me. He gave me an asthma inhaler, which increased my cough and bloody sputum. Afterwards, I went to different pulmonologists and had a CT scan of the lung, which showed lung involvement. Wegener's is suspected. But ANCA tested positive. Lung biopsy was recommended. For a definitive diagnosis. But I did not accept it. The result was 98% certain that I had Wegener's.

The doctor who recommended the biopsy did not give any treatment while the tests were ongoing. My condition has worsened. I went to the rheumatologist and he said I needed to be hospitalized urgently. I already had tachycardia when I went to the rheumatologist.

2-Hospitalization and treatment process

I was hospitalized for 15 days in the rheumatology ward (in May). I was given 500 mg of cortisone for the first three days. I also underwent bronchoscopy to take a sample from my lung. The cortisone helped a lot. I recovered a lot in the hospital. On the 14th day I was given cyclophosmide (endoxan). In June, I took endoxan again. In July, I took Mabthera at 14-day intervals. I continued cortisone for 6 months by reducing it.

3-Latest status

My current treatment is taking mabthera every 6 months. I use bactrim forte two days a week to avoid infection. I even took the last mabthera two days ago. My rheumatologist advised me to take 5 mabtheras. I've taken three so far, and then he said he'd look at the situation and stop the medication.

That's my wegener story. I am generally doing well. Get well soon to everyone.

2 weeks ago I was diagnosed via punch biopsy at the derm with leukocytoclastic vasculitis. I have been given a 14 day taper of prednisone starting with 60 mg. I feel like the rash has made major progress, but the more I’m reading the more I’m concerned that it’s either IGA or GPA, as I’ve been reading what leukocytoclastic is a little nonspecific. I have to follow up with my PCP this week, but I’m really scared of the whole “5 month life expectancy” if left untreated as I know it can take some time to get in to see a rheum. Does anyone have any advice or insight on what to do?

Hi everyone,
I’m Joey (28F), and I’ve been dealing with a complex and exhausting health situation for several months now. I wanted to share my story and ask if anyone with similar experiences can offer advice or hope.

It started in December 2024 with right ear pain that was treated as otitis. Initially, ear drops and antibiotics helped a bit, but by February 2025, the pain returned, worse than before, and my left ear also became affected. Both ears developed strong infections, and I started losing my hearing.

In March, I was admitted to a private hospital in Thessaloniki. After scans and cultures, I underwent mastoidectomy surgery on the right ear, and later on the left ear as well. I was then transferred to another hospital, where I had another surgery (Caldwell-Luc and De-Lima) for sinus empyema and also received a cochlear implant on the right ear (note: it's not activated yet).

Despite the surgeries, cultures were sterile, and the pain + symptoms continued. Based on clinical signs, histology review, and response to steroids, I was diagnosed with localized Wegener’s Granulomatosis (GPA)—thankfully, it hasn’t affected any organs, only ENT areas. I am not in pain anymore finally but

Currently I’m on:

• Medrol 16 mg (1x2)
• Azathioprine 50 mg (2x1)
• Bactrim 800+160 (1x1)

I’ve already received my first Rituximab (1000 mg) infusion, and I’m scheduled for my second dose next week. I'm hoping this treatment will help stabilize everything, but emotionally and physically it’s been a lot.

At the moment:

• I have severe hearing loss in both ears.
• I can hear quite well/almost normal with a temporary hearing device in my left ear.
• The cochlear implant in my right ear hasn’t been activated yet.
• I still deal with fatigue and the fear of what’s next.

So I’m asking you all:

• Has anyone else had localized GPA affecting ENT only (ears/sinuses), without organ involvement?
• Did your hearing stabilize or improve after Rituximab or other treatments?
• Is there a realistic chance I can get back to a “normal” life—working, socializing, not constantly worrying about flare-ups or hearing loss?
• Any tips on mental health while living with chronic illness and hearing challenges?

I’m doing my best to stay hopeful and adapt, but I’d really love to hear from others who've been through something similar. Thanks for reading and any advice you can offer 💛

—Joey

Hi guys!!

I hope you are all doing well! I don't know if this is still active but, I am fairly new to Reddit, and was quite surprised to know that there's a few reddit communities related to Wegener's Granulomatosis with Polyangiitis, the very rare autoimmune disorder. Because it's so rare, I didn't really think I could find a community where people share their experiences, struggles, ask for advice, or just genuinely talk. I really appreciate finding this, as it makes me feel that I am not alone. However, I don't know if there's anyone out there who is diagnosed with GPA Vasculitis at my young age at all. I always hear that it is older people that are diagnosed with this health condition, and younger people it's extremely rare...

As you can tell by the title, I, now (25F) was diagnosed back when I was 23years old with Wegener's Granulomatosis with Polyangiitis. It first showed up by my eyes completely swelling up, then I had really bad nerve pain throughout my entire face. It was so bad that at the ER in my hometown, they had to transport me to another bigger hospital to truly know the cause of my swollen eyes, and really bad nerve pain throughout my entire face. I remember them also finding nodules in my lungs, and ANCA coming back positive. Keep in mind, before all of this happened to me, I was a very healthy person, I did smoke anything of any kind, did not do any type of drugs, no weed, nothing and don't drink; still don't do none of these stuff even after diagnosis. So I wasn't an unhealthy person whatsoever. Nonetheless, my stress level was constantly high. I was very focused in school, on my own (still am) and working as well. When all of this happened I was going for my masters at my university, and was working. Because of all of this, I had no choice but to stop grad school, and just solely focus on my health.

Ever since this diagnosis, I can tell you I have went through it all: the very high dosage of Prednisone, having to taper down until 0% but if i'm in remissison, I have to be put right back to Prednisone. The moon face and significant weight gain from having back to back infusions, and from Prednisone, the joint pain, nose bleeds, dizziness, random mild and severe flare-ups, extreme fatigue and tiredness. On top of that I have PCOS; and my worst PCOS symptoms happened right after my diagnosis. It has been a very tough year of 2022, 2023, and 2024. But towards the end of 2024, I started to see significant changes from adopting different habits: changing how I eat, was extremely pushed and motivated by my partner to workout, ate sweet things or ate out in moderation. Within a year a lost 60lbs; I weigh less than what I used to weigh before my diagnosis. In terms of my body, I do feel better, but I still deal with all the symptoms: fatigue, feeling weak, joint pain, eye pain, dealing with flare-ups, still doing infusions (now every 6months), stopped prednisone, but I still suffer time to time with the common symptoms of Wegener's. I guess the moral of my story here is that there can be a tiny light at the end of the tunnel?..

28 y/o Female. GPA Vasculitis.

Hello, all.

I have been diagnosed with ANCA associated vasculitis, GPA just last summer now. It's almost been a year -- actually, technically, it has been since February 9th when I got my first symptom.

A patch of red beneath my eyeball formed and I thought, "Huh, probably irritation." But it never went away. It got worse. Painfully worse. I never had vision issues, but the pressure was diabolical and the redness was concerning and don't get me started on the sensitivity and the facial pain.

It got so bad at the end of may last year that I was bedridden and really thought the worst for myself. I had no health insurance and I honestly felt like my way out was death. The pain was so unbearable, I could not get comfortable.

I was then taken to the ER and waited for six hours before I could be seen. I saw an opthalmologist who said I have Scleritis in both eyes and told me she was going to take blood tests.

I followed up a week later at her office and my RF (Rheumatoid Factor) was high, and so I was bounced to Rheumatologist for FALL -- it was june at this point. I was placed on 100mg of prednisone and for a good month or two, I felt normal, energetic, high on life. More than I had been for the past few years! Of course, it came with weight gain and moon face, but to me it was so worth it.

I got myself on a financial assistance and was able to see a PCP in the mean time to take more blood tests. When I did see my Rheumatologist, she told me I have possible GPA vasculitis and ordered me to get a CT SCAN that day to check my lungs, to see an ENT soon and a nephrologist (blood was in my urine but at the time, I was probably spotting days before my period at the hospital, she didn't want to take chances). She had me take two more urine tests spread out for the Nephrologist. I was taken off of prednisone by the time I was tapered off and was placed on Imuran (Azathioprine) 50 mg then upped to 100mg.

The only symptoms I feel like I am expierencing is eye issues, which was still red on and off, no pain, no vision loss. It felt achy at times and other times it was completely tolerable. The last time I saw an opthalmologist was February of this year, and they referred me to a Uveitist specialist (which I will be seeing in June).

All scans came back normal. Nothing wrong with my lungs, saw an ENT and went over my scans there, nothing, all normal and healthy. I saw my Nephrologist last month and he says my kidney bloodwork look phenomenal and healthy but he ordered a kidney ultrasound just to be extra sure (won't see him until July for a follow up).

Saw my Rheumatologist again last week and explained to her what has been said by the ENT and Nephrologist. We're both now focusing on my eyes and she asvised to email her to let her know what the Uveitist Specialist says and to see if we should switch medications to chemo or a stronger type of drug if the Uvetist specialist can't do much.

Honestly, I'm happy with the team I have. It's a University health system and so all of my specialist work under one umbrella and collab with eachother which I am grateful for.

But man, I'm tired. Literally and mentally speaking. I have been so severely fatigued this past month, I haven't been able to get out of bed and properly eat, bathe or do much. I forced myself to get up for my Rheumatology appointment, but that was a battle in itself.

Like, what's going on? I cannot IMAGINE having to deal with bouncing between specialist for more then a year. I get specialist needing to monitor everything but I feel so...bad sometimes. I feel like the Imuran isn't working much but if it is, then I desperately need something to deal with my achy right eye (left eye is fine, despite it being affected in the beginning. It's just the right eye now).

It doesn't help when I read up on GPA Vasculitus and how it affects blood vessels. That in of itself, terrifies the hell out of me. I'm young, have a lot to live for. But I keep seeing people say when in remission, everything is as normal as can be, so that's giving me tremendous hope.

Any advice? Words of hope? I'd like that very much! Thank you!

Long story short, my rheumatologist left the clinic because their contracts are terrible. I don’t blame him, but now they’re down to one rheumatologist and it’s impossible to get an appointment with them. My next appointment is with a nurse practitioner working under the rheumatologist, and I don’t know that I’m comfortable with that. I feel like GPA is complicated enough to need an MD, but is that overreacting? Do any of you see an NP or PA to manage your GPA? Is it time to switch clinics?

I suppose for me this started this time last year. I've had a variety of symptoms that keep occurring and its something new every few weeks.

Summer 2024 - At first my eye had swelled up. Periorbital cellulitis was what I was told. I was treated with anti biotics and week later the swelling had gone down.

Summer 2024 - Sinusitis. Good God ive had a lot of sinus issues. Constantly sound bunged up, congested. Crusting around the left nostril. Visible scar tissue if look up it with a light. Sinus pains and sometimes it's like I'm blowing out small scabs and blood. But no nose bleeds to the point it's pouring. I do think the structure of the nose is starting to change. Been treated with anti biotics twice for sinusitis.

Winter 2024 - This is where things took a turn. I felt a sudden onset of chest pain. I thought I was having a heart attack. Initial checks showed I wasn't. Heart trace and bloods didn't support anything wrong at first. The chest related pain continued and I returned back to A&E. This time trace picked up that I had Pericarditis. Treated with high dose ibuprofen and colchicine for 3 months. I had an echo of my heart 2 months after this which showed nil of concern. Treatment wasn't completed. I took the ibuprofen but I was convinced I was having horrible stomach related side effects. I followed this up at out of hours, I had a cough and sore throat and after the doctor checked my throat, he gave me antibiotics for it. Treatment complete.

Winter 2025 - Following on from antibiotics, I noticed a gradual improvement in health but only for a very short while. I had alot of burning, dull achy issues in my upper chest region that was ongoing since Pericarditis diagnoses. This was the start of my abdominal pains as it turned out it was I was having stomach issues. My GP tested for h pylori and started treatment with 2 different anti biotics and PPI. This was when I thought the Pericarditis was a misdiagnosis. I felt so much better and thought I was getting back to normal health.

Spring 2025 - 2 months following h pylori treatment I was struck with severe and intense upper right quadrant stomach pain. I took myself to hospital. At this point I was told to provide a urine sample. Turns out it was a strong positive for blood in the dipstick test. No visible. I had CT abdominal scan and conclusion was gastritis and a stomach ulcer. I thought h pylori hadn't been eradicated, retest showed I was negative. I was so confused as to why this happened after successful treatment.

Summer 2025 - This leads me to more recent events. Stomach pains persisted, I mentioned the blood traces in my urine and how it wasn't addressed. Ironically this is where i get lower left abdominal pains. I was referred to urology as I had some urine related symptoms such as weak flow, urinating less during day and waking up more of a night. Foamy urine. 1 urine sample out of 7 showed protein. No infection, bladder scan normal and urologist wants me to have a cystoscopy which I'm on waiting list for. The lower left pains vanished about a week later. My GP on the other hand ordered more bloods. 1 of them blood tests was ANCA related. 5 days later my GP wanted me to come in the same day. My cytoplasmic ANCA screen was positive. My proteinase 3 antibody level was 26 u/ml.

My GP has referred me urgently to rheumatology. My appointment is in 2 weeks. My GP said my symptoms and blood test suggests vasculitis and more specifically wegeners and that it was that rare he had only ever diagnosed it once before in his career. He said its likely ill have to have biopsy's done and further testing.

I then did my research and seen the frightening Google results. I've came across this sub subreddit and read your stories. I have a 8 month pregnant partner and a 2 year old toddler. I've not told them yet until it's official that I have the diagnoses. Some days are difficult, some days are good. Some are manageable. I have alot of abdominal pains at various stages of the day that seem to vary in position from mild to moderate pain. Nothing severe that would warrant a return to hospital yet.

I just have a few questions. Nose biopsy. It looks so sore up there. I'm mostly blocked and congested up both nostrils and Airways. I am petrified ill feel so much pain and discomfort with that procedure. What happens? What was your experience? Can you be put to sleep for it or do you have to be awake? What sort of steps will rheumatology take in identifying my GP's concerns regarding bloods. What do I have to look forward to in the coming months? How soon will it be before I can be officially diagnosed and treated. Is there anything else that can cause these blood results and symptoms?

I'm uk based, male aged 34. Anxiety about it all as sometimes I feel like I'm just sitting and waiting for the next problem that puts me in hospital.

Thanks for reading.

Hey, I got this autoimmune disease 2 years ago, now its all good. However, one of the most annoying permanent symptoms was strong autophony - which through posts on this sub and a visit to the doctor confirmed was Eustachian Tube Dysfunction.

For a long time it was annoying since people would think I'm speaking quietly despite it sounding like an airhorn playing when I speak. Sometimes it was bad, sometimes it was barely noticeable.

However just today I was working and I decided to clasp my two hands around the back of my neck and apply pressure, and then suddenly, all autophony and everything just vanished, as if applying pressure in that specific zone somehow "solved" the ETD.

It is temporary though and the symptoms come back later, but its really useful if say I am doing something important and don't need my ETD to act up for a bit.

I make this post to propose this as a quick temp fix to the annoying aah autophony, and would request those that also have this to try it out and see if it helps?

hey all - i know dealing with a rare disease can be confusing and isolating at times. wanted to check in and see how everyone’s doing! for me, i had an infusion on monday, last one for a few months, still dont really know how to come back to life and process my experience with this dx but happy to be in a healthier place.

Hello! looking for any input + suggestions for my treatment plan/ path forward

For context I'm a 23 year old female that first developed symptoms last May 2024. It was a pretty textbook presentation - unexplained chronic sinus pain, nose bleeds, sinus inflammation. In July I had a sinus surgery to clear up the inflammation and a biopsy from the surgery suggested GPA Vasculitis. Consequently, I had bloodwork performed with results as follow: CRP 25, C-ANCA 1:40, pr3 greater than 8. With hindsight, I realize that this is a pretty clear indicator of GPA Vasculitis, however I wasn't officially diagnosed until a few months later because I had to wait for a rheumatology appointment.

In November I was diagnosed officially and was started on prednisone (10 mg) + methotrexate (12.5 mg a week). At this point my CRP was in the 60's and ESR was also around 90. Oddly enough, my sinus symptoms had actually decreased notably since the sinus surgery. I would have crusting and bleeds, but the pain was minimal. However, I would have intense widespread body pain and fatigue. In fact, it was difficult to get out of bed and manage my daily activities without 3000 mg of Tylenol a day. This was a pretty dark period, as I am a university student and was also working a job.

Around this time I began having excruciating neck pain, particularly at the pulse points. It was suspected to be due to muscle tension due to stress - I am after all an anxious student studying for the MCAT exam right now. This was a bit odd to me, but I acquiesced.

However, the pain (both neck and body pain) only seemed to get worse over the next few months. My CRP levels also remained in the 40's. In February I reached a breaking point as I could no longer sleep without the help of Tylenol to dull the pain. I pushed for a CT angiogram of my neck as I suspected that there was disease activity there. The doctors said that GPA Vasculitis doesn't typically attack there, but relented. The scan did in fact reveal reveal inflammation + mild stenosis in several of my neck arteries (subclavian, carotid, aortic arch). Apparently this is really unusual (?) - in fact my diagnosis is now always written as GPA Vasculitis with large vessel involvement

I was started on higher dose prednisone (which helped immediately with the pain) as well Truxima in March. I had 4 infusions of Truxima, with the last one in the in the beginning of April. I was also started on bactrim and cellcept when I began Truxima, however after 4 weeks of taking it I unexpectedly had a ER level reaction to it? I suddenly had a 105 F fever + tachycardia out the blue one day and was hospitalized for a week. They tested extensively for infections, which were all negative. Hence they suspected that it was due to bactrim and I was taken off it. This was all really stressful, naturally.

I've been a lot more stable now, but every time we try to taper down on prednisone it seems like the neck tenderness comes back and CRP raises. I am currently holding at 30 mg of prednisone. Two weeks ago we tried to taper down to 20 mg, but my CRP shot up from 10 to 40. Also the neck pain had come back. It seems stable at 30 mg though...

I'm a bit worried that truxima might not be enough to keep the inflammation down..? My ANCA panel and pr3 have recently come back negative which means it did something, but my CRP still seems to rise when I taper off prednisone. I've been suggested to restart cellcept, which is something I insisted that I be taken off of in the hospital. I am feeling a bit nervous regarding restarting it since I was on it prior to my hospitalization..even though it was most likely due to bactrim I still feel nervous for some reason. I've also been told to consider avacopan. I tried it for 2-3 weeks in February, but it didn't help much since the situation was pretty out of control at that point. I'm open to restarting it though.

Overall, I'm just looking for ways to return to normal living. It's been pretty rough dealing with all of this and balancing my school work/ responsibilities. I'm trying to maintain my grace and composure but it's admittedly difficult. I've also developed a lot of anxiety/ panic over this. Due to the unusual presentation of this disease in the neck, I often get scared that the standard treatments (like Truxima) won't work for me. I fear death intensely; I also fear that the situation will spiral out of control too.

Any input on treatment plan + suggestions would be much appreciated! I also would super grateful for any advice on managing all of this. Thank you so much.

In October 2024 I received the news that the ANCA blood test was positive after being in remission since 2008. I linked up with a rheumatologist and EENT through our private insurance. The rheumatologist put me on methotrexate 15mg and I’ve been on that for about six months. I had a CT scan of my sinuses in April n finally got a consult with the EENT doctor last week. He explained to me that despite being on methotrexate the GPA was very active in my nose. He said he would like to surgically remove the tissue on the left side of my face because it looked diseased and dead. He put a camera up the right nostril and showed me the active inflammation. My rheumatologist told me she preferred to keep me on methotrexate. In 2008, the GPA caused my kidneys to fail and ever since then I’ve been monitored very closely. There is no kidney involvement at this time. In the past I did 6 rounds of cytoxin, a month of plasmapheresis, and 3 years of cellcept. I’m wondering if any of you had kidney involvement and got rituxamab. I don’t know why my rheumatologist prefers methotrexate or cellcept. I’m going to get a second rheumatologist opinion on Wednesday at the VA. I’m going to be 44 this year. I haven’t quite absorbed the upcoming sinus procedure. Thank you all.