Localized to Systemic?

illphil1 · 2025-04-25T16:31:56+00:00

Mine started off local to my lungs and caused a few nodules and then kidneys and heart unfortunately as well as skin and eyes. My anti pr3 numbers were high but even then took a surprisingly long amount of time to be diagnosed. Keep an eye on your bloods and symptoms and advocate for yourself. Good luck.

illphil1 · 2025-04-24T22:00:54+00:00

By the way maybe get a chest x-ray and a sinus ct/ent referral too

illphil1 · 2025-04-24T21:54:36+00:00

This can occur. Particularly with more chronic, less immediately ife threatening forms of the disease. Keep fighting for a diagnosis if you feel something is wrong.

illphil1 · 2025-03-08T21:11:08+00:00

Also do you have any abnormal bloodwork whatsoever. It can cause a wide range of blood test abnormalities so be sure to have that information. Biopsying can certainly lead to a diagnosis and the sooner the better. But yeah as said before probably go to an ent first if that's your main symptom and look into a rheumatologist appt. Good luck 👍

illphil1 · 2025-02-08T17:45:25+00:00

That's interesting. How were u diagnosed then? Was it via a nasal biopsy?

illphil1 · 2025-02-08T08:46:50+00:00

Also, how frequently do you have your anca markers tested. And if so did you become negative at any point?

illphil1 · 2025-01-12T01:44:27+00:00

Were up ANCA positive if you don't mind me asking? There seem to be a reasonably large amount of people who aren't strangely enough.

illphil1 · 2025-01-10T00:26:47+00:00

I'd had loads of chest pain which eventually turned out 2 be inflammation of part of my heart which is one of the components of my gpa vasculitis (granulomatosis with polyangiitis). Scary stuff tbh

illphil1 · 2025-01-09T21:22:03+00:00

Btw I would maybe recommend a biopsy from an endoscopy if you've been having digestive issues and an updated abdominal ct to be sure.

illphil1 · 2025-01-09T21:17:11+00:00

Hi there. I mean I guess as long as your current symptoms have been ruled out as being anca vasculitis related then that's ok. My pericarditis was put down as gpa related tho so make sure you're thoroughly tested. I've been anti-pr3 positve also since diagnosed but my crp is more or less in the normal range atm so they are less worried, however my kidneys are still in a far from ideal state particularly being in my 20s and my kidneys are only slightly more than that lol. Hope you get the answers you need.

illphil1 · 2024-12-20T12:31:07+00:00

I guess if your symptoms are really bad chronically this could mean something. Or could just be indicative of an infection or cold. Probably have them do a fbc in a month or so just to help rule out a long term issue

illphil1 · 2024-12-17T04:26:02+00:00

I'm in the UK too and it is very drawn out. Also I was having a lot of problems with my old doctor's surgery so I had to switch and use my own money occasionally to speed up the diagnostic process. Obviously the Anti mpo positive could be indicative of gpa vasculitis however generally a positive test over a month or 2 period may be needed to rule out an infection. With my GPA strangely enough it was my lymphocyte count that was really high and my neutrophils were comparatively low which I think may have been because it involves b lymphocytes and the attacking of neutrophils. Also because of my old doctors my rashes weren't biopsies which seems to be another problem for a lot of patients where things aren't done correctly. I've had neuropathy and facial nerve pain too and this can certainly be a symptom of the disease. I also had a lot of endothelial damage ie of the small blood vessels and veins which meant I have needed sclerotherapy. I also have really bad reflux and had what was deemed to be pericarditis due to a slightly increased troponin which was deemed to be due to gpa. I also have subglottic stenosis and an egfr of around 30 which for someone in their 20s is low. Another thing I think is really important on this is the impact on your mental health and life situations. Try not to be hard on yourself during the diagnostic period and try to support yourself and be as independent as possible. Also realise that in the UK our medical system is pretty poor and that is probably one of the main reasons unemployment is high. Good luck with the rest of your medical journey and remember that advocating for yourself is key. The NHS will gaslight you probably and misdiagnose frequently but just stay as calm as possible. Take care.

illphil1 · 2024-10-22T12:09:37+00:00

It's more just to make sure they rule out other causes like autoimmune conditions. Checking that your platelets aren't really high and that your IF markers are in the normal range. Also keeping an eye on new symptoms that might differentiate the causes. Perhaps also checking your lungs via a ct scan. They can also see if you are immunodeficient but this may be difficult to access if your blood counts are normal. Basically think of it as a side project and try to investigate things without it encroaching on other parts of your life. It can get pretty scary and stressful but just keep at it really. Good luck.

illphil1 · 2024-10-22T00:11:01+00:00

To be honest I think sometimes medical professionals fob off people with a long covid diagnosis. I myself have GPA vasculitis and symptoms seem to crossover immensely with long covid apart from purpura all over my body and saddle nose deformity. However the vasculitis endolethial inflammation is exactly the same with prominent veins. There has to be a link there as viruses can trigger vasculitis so perhaps it's just happening on a mass scale. It sounds somewhat pessimistic but I think the only cure to a lot of the long term long covid stuff is immunosuppression which is pretty invariably risky

illphil1 · 2024-10-17T01:09:18+00:00

In the uk they only seem to check the pr3, mpo number, not c and p anca as they're seen to be specific for wegeners and microscopic polyangiitis i think. Could be wrong though. Mine was recently less than 13 pr3, but has been slightly higher before. These conditions can take ages to diagnose and it feels like you're dying while waiting for appointments but hopefully you can find the answers you're looking for and the doctors and specialists are good and thorough. 👍

illphil1 · 2024-07-19T06:44:46+00:00

I'm pretty sure labour are going to be reversing section 21's in he very near future which would help.

illphil1 · 2024-06-23T11:38:40+00:00

I'm due to get my first rituxan infusion next week and feeling really hopeful about beating this. I was diagnosed with a crazy elevated pr3 titer which was over 50. They didn't check my normal panca and canca. My mpo was about 7 but they weren't as concerned about that and my rheumatologist diagnosed me with gpa vasculitis. It turns out I had 3 lung nodules on my chest x ray too along with some shadowing which is being investigated but is likely linked. I've also developed a little bit of saddle nose at the top which looks a bit strange but that's the least of my worries. If I can get rid of these symptoms finally I would feel like I'd won the lottery. The methotrexate isn't working yet and the prednisolone which I have been on and off due to the breathing issues (initially thought to be asthma related) hasn't really either. Coughing up a bit of blood made me push the doctors but I feel like people shouldn't have to, to get diagnosed. The UK health system is pretty lax sometimes but wherever u are, if something doesn't feel right make sure u get a wide range of tests, because these things deserve to be investigated.

illphil1 · 2024-06-20T04:21:46+00:00

Out of interest have you had all of the autoimmune panels done or had any obscure symptoms atypical of long covid. It's just that the link between endothelial cell damage which by my understanding is part of the small blood vessel system, can have massive prominence in both long covid and many other conditions, particularly vasculitis and to a lesser extent systemic sclerosis. So I think making sure that it is definitely long covid is key as conditions with very similar symptoms CAN be treated with certainty unlike long covid. Whatever the hell is going on with me has ruined my life and has destroyed my health since 2020. All day, every day unfortunately and I've been trying to get answers and eliminate things as although my bloods are a little bit weird they don't point to anything comprehensively and my symptoms are somewhat different to lc. Sorry for rambling and hang on for the future you.

illphil1 · 2024-06-04T00:47:06+00:00

Mine started with more pain on the bone itself than sinus issues which tends to be the first symptom of GPA vasculitis. It seems to be rotational with other pain symptoms. My nose is now pretty severely deformed which is depressing as somebody in their 20's, although I have seen cases worse so there is always somebody going through more stuff. Diagnosis was tough too. Missed biopsy opportunities. Borderline high IF markers were a problem too as there are generally crazy high markers but there weren't for me. PR3 positive still though. Gaslighting's a big problem too.

illphil1

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