I was diagnosed with EGPA in December 2020, following intensive treatment including cyclophosphamide infusions I went into remission the following April. Since then I am on a drug regime that includes Azathioprine and Prednisolone. I am currently tapering down the latter with a view to stopping.
I have however for quite a few months experienced sinus and hearing issues (the tapering started later). Most recently I have been diagnosed with severe polyps which will require surgery although this is not likely to happen for at least six months. My main issue is hearing loss and pain that started in the left ear. In October last year I developed an infection in that ear which was only sorted a couple of months later by my Vasculitis consultant (renal specialist), despite several ENT appts. Although the infection cleared up there was a loss of hearing and the tinnitus at times can be ‘off the scale’.
I have now got similar issues with my right ear but without the discharge (at this time). My consultant checks my bloods every three months and the ANCA count remains at zero. My consultant has no qualms about referrals to other specialists including ENT. I have also seen a neurologist over balance and mild shaking issues.
My question is whether others have experienced similar issues and whether there was resolution? Also does negative ANCA mean that this cannot be linked to Vasculitis.
i will not be seeing an ENT specialist regarding my ears for at least six months (a pattern emerging), but I do see my consultant in a couple of weeks when I am back from holiday. Apologies for the lengthy post but I would welcome the experiences of others. Many thanks.
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MIK65
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1. I have MPA even though I don’t have ANCA. I was diagnosed by Prof David Jane at Addenbrooke’s
2. A meditator friend had tinnitus and it was driving him mad and he felt he couldn’t meditate with that going on He was quite desperate His meditation teacher told him not to concentrate on the breath but to open his awareness to listen to the tinnitus directly, make that the meditation object, and to keep on all the time during everyday activities where possible He kept on and on listening to the sounds of the tinnitus- some quite harsh and loud. Eventually the mind got bored listening to the tinnitus and let it be, so the mind became free of it It went on but in the background so the mind wasn’t caught up in it
I wonder if it is like living near a train line or busy road - you just edit it out after a while
Many thanks for the response. My ANCA levels on diagnosis were extremely high which is why my consultant uses that (understandably) as a measure of progress, although she is quite open minded about things. I will be discussing this further at our next meeting.
I have had tinnitus for quite a few years albeit not on this scale. I do try and use distraction techniques but this is very difficult when combined with the pain and hearing loss. The ENT Consultants refer to hearing aids whilst not really getting to the bottom of the issue. The most recent consultant dealt with the polyps by placing me on a waiting list and has referred me to another over the hearing which as I said is at least another six month wait. I will press the Vasculitis Consultant for an early intervention but as with most hospitals there are significant waiting lists I suppose I should be grateful I’m on the lists at all. 😅
Sudden hearing loss is serious usually treated with high dose steroids. Ear problems are common in vasculitis. Are you being seen at a vasculitis centre??? You can have flares without positive anca levels. Some types of vasculitis eg relapsing polychondritis are known to be anca negative!
Thanks, that is very helpful. I thought that may be the case. I’m under a Vasculitis specialist with support from a Vasculitis nurse. I want to make sure of my position when we have the consultation in a couple of weeks.
I’ve very recently been diagnosed with GPA and have lost my hearing completely in my right ear over the last 8 months and now wear a hearing aid in my left ear since march. Previously I had no issues with hearing. Mine started in my right ear and then onto my left. My ENT consultants and rheumatologist both have it down to the vasculitis and are hopeful some hearing will come back in my left ear now treatment is underway but very little hope for my right ear.
I am ANCA positive and had both pain and discharge from both ears at differ points from August 2023 till April 2024. I’ve no discharge or pain any more but they do still feel ‘full’ and my right ear in particular has insane tinnitus - loud enough to wake me up at times.
I’m sorry to hear that things are so bad for you. The full feeling you describe is almost as irritating as the tinnitus. It is helpful to understand what other have been/are going through. Whilst I have tried to remain open minded, the more things progress the more I am convinced the issues are Vasculitis related.
I was diagnosed with GPA in September 2022 with very high ANCA positive. The GPA had affected my hearing, sinuses, kidneys & lungs. Five sessions of Cyclophosamide had no impact but a combination of Rituximab, Prednisolone & Avacopan got me into remission by the autumn of 2023 with ANCA readings negative.
Hearing in my left ear was damaged by the disease and I was given hearing aids but I don’t find them much use at all so rarely wear them. Until very recently I had tapered down to 1mg Prednisolone and about to stop taking it completely.
However, I recently started feeling unwell with aches, nosebleeds, blocked nose and ears. Blood tests showed ANCA negative but CRP infection levels raised. My Rheumatologist believes it is a GPA flare so I’m back on high dosage steroids to get on top of it.
This is by way of background, but I understand from my online research and the response from my Rheumatologist that ANCA negative readings do not mean that GPA is not active. I read that if the GPA activity is limited to the upper tract region of your body then 10% of patients will present as ANCA negative.
Thank you for taking the time to outline your journey. Hopefully things will improve for you soon. I find it useful to hear that ANCA negative does not always present a full picture. The responses are definitely helping to shape what I want to raise at my consultation.
Mr Martinez de Pero is the best ENT doctor I have seen. You need an ENT doc with knowledge of vasculitis. BTW my son had tinnitus and was also taught to block it out. Sorry I know that’s easier said than done. Good luck I hope you get some help soon.
My consultant thought she was referring me to an ENT Consultant who specialises in Vasculitis. However I’m not sure his colleagues share the same knowledge. The fact sheet is very helpful. I am normally able to manage the tinnitus quite well, at the moment it is the extreme end. I will get there I’m sure. Thank you for your response.
It is certainly possible that the tinnitus is related to the vasculitis, but possibly irrelevent from how you manage it. It's worth pursuing that in case there are treatments that can halt it or even improve it.
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Newly diagnosed GPA without renal involvement. Sorry it’s long. 
