Is there anyone on here with GPA Vasculitis and has a saddle nose deformity? Or lost their hearing and vision?

[emmachamberlain]

I feel so alone in all this

[Main1234]

hi I am aware that there is a wonderful lady on the vasculitis face book site that lost her nose and had a wonderful construction at Birmingham. They even did different colours to suit summer . She has written excellent articles about her journey.

My husband has GPA and lost his hearing (wears a hearing aid) but when treated hearing returned.

I’m sure others will be able to offer support but this site is excellent. Are you under a good team? The vasculitis help line can offer support and signposting as well.

[Mooka in reply to Main1234]

I think the lady you are thinking of is Jayne Hardman.

[emmachamberlain in reply to Main1234]

Thank you so much, I have spoke with Jayne previously she put me in contact with Vasculitis UK whom with out them and my doctor my situation could be a lot worse. Im truly grateful for anyone who can help.

Thank you for your time and reply Im truly grateful, Im sorry im so terrible at responding, im battling with my mental health and general life is crazy, I am being made homeless in a month (not fault eviction) and have no care team, after asking for a second opinion, I have been left again. It appears my past will forever leave me unheard. Im fighting hard and have done since this began, with research and a few amazing people and organisations I am being treated to some degree and its better than nothing. x

[emmachamberlain in reply to Main1234]

I currently don’t even have a Point of care x

[Dave-evans]

Hi Emma, I have gpa and all three of the issues you've mentioned and a few other nasty issues with it. My hearing and vision are not total loss thankfully. My nose is pretty well worn shall we say. It's a tough illness to navigate and depending where you're from you may not see others with it. I have had gpa for around 35 years now , lots of battles along the way and never met anyone else with it. I think it's important to understand what support you need and how to get it. There is usually someone on the groups who will have a good suggestion as they will have gone through similar themselves. I'm from quite a rural part of Wales and not many doctors know much about these things. Good luck with everything and keep your spirits up as best you can it helps alot.

[emmachamberlain in reply to Dave-evans]

Its sad but relieving that there are others with the saddle nose deformity (I wouldn't wish any of the awful symptoms on anyone), im not sure if id rather be suffering alone as knowing others have faced potentially what I have and am, is awful, but i guess thats where we can all find comfort. Up until my post i hadn't come across any other GPA sufferers on here with the saddle nose deformity. Thank your time and reply. It means more than you could know xx

[FryTuck]

Hi, I am like you and was diagnosed with GPA a few years ago. This has affected the appearance of my nose, my hearing and I also have been treated for uveitis of the eye.

I completely lost hearing in one ear and the other ear was affected but not so badly. I was unable to make out speech on the radio and TV despite using a hearing aid. Luckily after a course of cyclophosphomide and steroids followed by Azothiaprine my hearing improved and I now manage without hearing aids. It is very isolating when hearing becomes so distorted and makes it hard to socialise and of course take in what the doctors and other people are saying. I was lucky to have a very sympathetic renal consultant at Exeter R&D hospital who acted swiftly to rearrange treatment when they found Rituximab infusions weren't making much difference.

My nose looks a bit weird but as I am in my 70s I don't worry too much about my appearance and nobody has suggested reconstructive surgery so I haven't gone down that route. My eye problems were treated quickly but it took a long time before the redness and irritation subsided after various different approaches - I had to increase my dose of immunosuppresant (Azothioprine) as well as using various different eye drops. My advice to you if you are finding the treatment you are receiving does not seem to be working is to ask your GP for a second opinion from a consultant who specialises in vasculitis at a hospital such as Addenbrooks in Cambridge, the John Radcliffe in Oxford or Hammersmith in London.

The consultant who made a difference for me was Dr Lucy Smyth at the Royal Devon & Exeter hospital.

Best wishes and I hope you start to improve soon

[emmachamberlain in reply to FryTuck]

By pushing to get the care I’ve needed I’ve been left with none. By asking for a second opinion, I was told I only felt this was because of my mental health and that I coudlnt tell them how to do their job. The doctor walked out saying he only deals with happy people and I’m not a happy person, everyone around me says how amazing it is I’ve stayed so positive. I only said the tests that I was advised should be done and the advice given to me by Vasculitis’s UK. I was able to get them to a diagnosis via research’s and the treatment I’ve had an already has been guided by the knowledge and luck of my doctor knowing someone with GPA. I now have no point of contact, no one managing or monitoring my bloods after treatment and a refusal to look at my bloods by the rheumatologist who is my Vasculitis specialist as he didn’t request the bloods even tho they a relatable to long term steroid use and Vasculitis. I don’t know what to do anymore. Sorry not looking for you to know, I guess venting. As I know sadly you will understand somewhat x

[FryTuck in reply to emmachamberlain]

Hello Emma,

Sorry to hear that your rheumatolgist has been so unsympathetic. GPA is not always well understood and it takes time sometimes to find the best treatment as each individual presents a slightly different set of symptoms. I hope your GP can give you some guidance, or alternatively the vasculitis advice line. Good luck

[Midgetgem23]

Hi, I was diagnosed with GPA in October 23, after being treated for vertigo by my doctor, until a visit to ENT, changed that. So far I haven’t had any problems with my nose, but I have single sided deafness (SSD), so wear a CROS hearing aid, I also have a Wet AMD in my left eye, but having injections to try and correct this.

[Roughley17]

Hi Emma I was diagnosed with GPA five years ago. I have some hearing loss but otherwise the treatment has been very effective after being very very ill.

I'm under a Consultant Rheumatologist whose care has been excellent. He has referred me in the past to other specialists as they were needed. It's important that you are seen by the right people as I've found there are subsidiary specialists e.g. I saw 2 ENt Consultants before finding the right one. If necessary, keep pushing until you get the care you need.

Good luck Emma.

[emmachamberlain in reply to Roughley17]

By pushing to get the care I’ve needed I’ve been left with none. By asking for a second opinion, I was told I only felt this was because of my mental health and that I coudlnt tell them how to do their job. I only said the tests that I was advised should be done and the advice given to me by Vasculitis’s UK. I was able to get them to a diagnosis via research’s and the treatment I’ve had an already has been guided by the knowledge and luck of my doctor knowing someone with GPA. I now have no point of contact, no one managing or monitoring my bloods after treatment and a refusal to look at my bloods by the rheumatologist who is my Vasculitis specialist as he didn’t request the bloods even tho they a relatable to long term steroid use and Vasculitis. I don’t know what to do anymore. Sorry not looking for you to know, I guess venting. As I know sadly you will understand somewhat x

[Roughley17]

Hi EmmaSo sorry to hear what's happened to you. Maybe your GP can help?

S/he should be able to refer you and monitor bloods to some extent.

Hope things improve for you.