I’m not yet diagnosed with vasculitis, but it has been raised as a possibility following a positive anca blood test. I’m waiting for some more results to tell me what titer/presentation etc. I’m really scared about the possibility of vasculitis, and looking for a bit of advice/support while I wait for more results. I’m feeling particularly freaked out by the unknown of it all!
Ive added a huge paragraph (sorry!) about my symptoms below, and I have a few questions at the end. I’d really appreciate if anyone could answer these questions or offer a bit of guidance.
Symptom-wise, I have suffered from recurrent anterior uveitis and episcleritis for the past 10 years. We always suspected this is because of an autoimmune condition (I have a history of Grave’s), but nothing particular was ever flagged. Recently my ophthalmologist ordered a full autoimmune screening panel, which came back positive for ANCA but otherwise fine. Other than the eye problems I have some generalised symptoms which can come and go - fatigue, joint and muscle pain all over (but particularly in the knees), poor temperature regulation, and headaches. Ive also had a few potentially nerve-related symptoms which persist for a few weeks, then go away for months at a time - pins and needles in my lower legs and feet, shooting pain in my arms. I’m diagnosed with Raynauds, and have dishydrotic eczema on my hands. My blood pressure is quite high right now, but this might be related to ongoing stress at work. I don’t have the typical vasculitis rash, no sinus issues (I do have a bit of a dry crusty nose, but not sure if this is actual nasal crusting or not), no cough, and no kidney symptoms as far as I’m aware (but kidney function has never been tested). I’m a 25yo female.
Ive done some research, but I’m still unsure about a lot of things:
- Does a positive anca test always indicate vasculitis, or could it be something else?
- Has anyone been diagnosed based off positive anca test and general symptoms alone, or do you need to have sinus/lung/kidney involvement?
- Has anyone experienced eye symptoms as the first manifestation of vasculitis?
- What sort of tests do I need to request to rule out or confirm vasculitis?
- Do other people’s symptoms usually come and go (or did they, pre-diagnosis)?
Thanks very much for reading
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EA_24
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A positive ANCA is likely to be GPA (Wegener’s Granulomatosis with polyangiitis), which is what I have. Main issues for me is nasal, and ear when it first manifested along with feet, hand, knee and elbow joint pains......also malaise and severe weight loss, as during my last relapse 6 months ago I lost 12kgs.
I was first diagnosed with GPA when they found two coin lesions on my lungs during an annual company medical.
I manage the condition as I had PAN when I was 21yrs old, but I relapse if my steroids go below 10mgs.
Other blood tests include CRP and ESR, these indicate if you have inflammation or infections....
This is all treatable with steroids and a maintenance drug such as Imuran.
Hi EA_24. The symptoms you describe are similar to what I had, I’d like to know what the positive marker count was, mine was 177+ my symptoms were headaches, Episcleritis, short of breath, body pains and kidney function reduction (I’d didn’t know because kidneys don’t have pain receptacles) and yes I was diagnosed with GPA. I was also told that stress can and will excelerate or trigger Positive ANCA. Thats the bad news out the way now the good news.
Having GPA doesent mean that’s it means I’m going to be ill now but this part is up to you mostly. Yes you can wallow in pity and feel sorry for yourself and truly I understand that, alternatively if you were to go onto treatment you can be stubborn and focused and refuse to let it beat you, live a near normal life and make things brighter. I am 63, diagnosed in 2019, people in the same position as me were thinking a about the worst, I walked 5 miles every weekday and bought a new pushbike, that kept the weight gain from steroids away. I recently did Movember and set myself a target of 100km additional walking from normal activity, I did 164km even when I had mr Rituximab treatment in the middle (raised some money too) it made me feel great. I travel the world and do what I used to. Please please fight back and win, trust me it’s the only way. Your young and that’s a positive thing and I evenan older person with uncertainties like me can live a near normal life then you can. I was bricking it to start with, lost my confidence and yes I have days where I feel crappy with the treatment and yes worry about catching viruses ( I’ve had Covid 3 times, last one no drugs);but I am still batting at 63 not out. Take care and forward. Nick.
Thanks for this Nick, I’m glad to hear you (and others) are cracking on and enjoying life and not letting the diagnosis get you down - it’s really inspiring
You need to get an expert opinion ideally from a consultant specialising in Vasculitis.
I had sinus, random joint pain and fatigue for a few months before diagnosis when I was hospitalised barely able to walk. At then end I had loads of blood blisters, mouth ulcers and pink eyes. I lost about 7kg. I had two kidney biopsies, as well as other scans. There was some kidney involvement.
My very first symptom was through my eyes. I may have ignored some early ones because of perimenopause. I did get a diagnosis on positive ANCA and symptoms alone back in 2015. I had episcleritis, joint pains, nose blockage/blood and eventually a rash. By the time I saw a consultant I had nothing they could take a biopsy from to confirm. Because I also had some chest involvement the consultant was going between EGPA or GPA. I had a very short round of Rituximab, followed by steroids, and Mycophenolate over an extended period. In the end he felt it was GPA.
After being in remission for 8 years I have had a relapse. Again it started with my eyes and I was pro active. This time it has attacked my kidneys and I am half way through a regime of Rituximab and Avacopan. I had a kidney biopsy and that finally confirmed it was GPA.
I only had the blood tests and symptoms for the initial diagnosis. It was incredibly daunting at first and I did live in a bit fear of what it would do to me and for it's return. I can't quite make out if I live in a state of denial or fantasy these days, as I try very hard to not dwell on it 🤔
Hi Kellie, thanks for sharing this. One of my big concerns is that if I do have GPA, the diagnosis will be missed because I also don’t think I’ll have anything to biopsy. Can I ask how long it was after developing episcleritis that your other symptoms appeared?
I’m glad you’re not dwelling on it too much! I hope all goes well with your current round of treatment
My memory is shady as it was so long back. I was having all sorts of issues over about a year I think. I felt like my GPs (couldn't guarantee seeing the same one) thought I was a hypochondriac. At that time my hubby had private health insurance that also covered me and my son. I ended up seeing a private rheumatologist and got the diagnosis then. He was also the local NHS one, so he transferred me to his NHS list. I hope you get an answer soon.
thanks everyone for all the replies! I’ve confirmed that I’m positive for C-ANCA and PR3, so GPA does seem likely. Either way I’ll try and get referred to a specialist to look into this further. I’m glad to hear so many of you are coping well with your vasculitis treatment
Hi I just noticed your original message was 23 days ago so I hope your Induction treatment is well underway by now! Best of luck, it's a roller coaster but this Group helps a lot!!
Unfortunately I’m caught in a bit of a stalemate between my ophthalmologist and my GP - my ophthalmologist thinks my GP should be the one to refer me to a specialist based on systemic symptoms (he says he can only refer based on my eye symptoms, and I’ll have a better chance if all symptoms are considered), but my GP refuses to see me about this as he thinks I should only discuss it with my ophthalmologist. Considering changing gp practice at this point as I feel like I’m going nowhere! And like you say, time is of the essence
Yes I strongly recommend you get proper experienced attention asap in the best way you can. My case is different from yours but I lost a lot of kidney function very rapidly. Once they suspected vasculitis they moved immediately to Induction treatment even before the kidney biopsy confirmed the diagnosis. I went from near kidney failure to now moderate decrease in function. Good luck!
I had similar symptoms a few years ago and was diagnosed with GPA in September 2021 following positive ANCA, PR3 and high CRP levels. I did not have a biopsy and was assigned to a wonderful Rheumatologist who immediately took control of my treatment and I have remained under her to this day. I have also seen and continue to see various other consultants and my experience of the NHS, following diagnosis, has been incredibly positive.
Nick (who has already replied to you) and I have had similar GPA experiences so if the two of us over 60’s can battle through this and get back to doing physical activities then you, as a 25 year old, certainly can. Nick and I are both travelling abroad again and living normal lives so think of us old boys to give you inspiration to fight this disease.
As Nick alluded to above, it will not be easy over the next few months with treatments but always try to stay positive, trust the experts and push yourself to do things as much as you can. Your body will let you know when to rest.
If it is GPA, based on my experience, you will be immediately given high dose oral Prednisolone steroids (60mg per day in my case) which are tapered over the coming months and a course of 6 Cyclophosamide infusions over a 3 month period. Cyclophosamide is a chemotherapy type drug but it is not as strong as some of the cancer chemotherapy drugs and I experienced no real side effects from it. Unfortunately, the Cyclophosamide did not work for me so after 5 infusions I was given Rituximab infusions which were successful and I now have a 6 monthly maintenance infusions.
There have been a few ups and downs over the past 27 months but I have always remained positive that I will win.
I wish you all the best in your fight. You are not alone and us fellow GPA sufferers are always here provide further advise and support whenever you need it.
Uveitis was one of my first symptoms of GPA/ANCA associated vasculitis. I did have a lot of joint pain and alarming neuro symptoms too. Also my nose was sore and crusty at times. Only ever had a few spots, nothing more. So it might be the same for you. Or it might not. Glad to hear your ophthalmologist is on your case.
Eye symptoms were my first symptom. You can even have vasculitis without a positive anca. It is a complex condition. Speak to someone on the vasculitis telephone helpline
- Do other people’s symptoms usually come and go (or did they, pre-diagnosis)?
It happens, except if you have severe vasculitis. Then usually you end up in hospital. Symptoms can come and go (you can have flares) for a long time if they are not severe enough to cause necrosis in an organ. That's why it takes longer time for some people to get diagnosed.
It is overwhelming to be investigated for a rare chronic illness that you probably have never heard of before, but if you have vasculitis the treatment has improved a lot over the last decade. I live with GPA vasculitis with nose/sinuses, lung, abdominal, skin, joint and nerve involvement and I am in remission. I was diagnosed more than 10 years ago.
Good luck with the next steps and keep us updated.
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