GPA query

[Red-head44]

Morning troops

After being diagnosed in 2016 and taking 6 years to go into remission and off all meds I am having a relapse which isn't as bad as it was originally as at least we are on the case immediately. The specialist has referred me to the Ear Nose & Throat clinic for the pain in my nose/face. This was where the pain and symptoms started 7 yrs prior to diagnosis and a year before diagnosis I had an operation on a deviated septum thinking that would help the pain but no. I am continually on a med to cope with the pain even though I was in remission and it is no longer coping with the pain. My question is - how will the ENT clinic be able to help? It isn't as if there is anything to see if they put a scope down. I am waiting for an brain scan to check the blood vessels and capillaries in the skull as discomfort can range across the scalp and down the back of the skull. Does anyone have any information on help ENT can provide or questions for me to ask?

[Main1234]

hi

Not sure I can help directly but when my OH had a flare/ relapse, symptoms nose bleeds, horse voice and hearing loss. He had been diagnosed with GPA vasculitis and had been on drug induced remission. He was referred to ENT but they decided he needed to be treated by his rheumatologist ( we were happy with this) he commenced RTX which put him back in remission and the “ENT “ symptoms cleared. Luckily no lasting damage.

Hope you get relief soon.

[Dazler99]

Hi,

I was diagnosed with GPA just over 2 years ago. Based on my experiences with ENT, I am not sure how they can help you apart from putting a scope up your nose to examine if there’s any damage. My recent ENT examination confirmed that there was no damage to my nose and vocal chords which was reassuring.

I would say that a Rheumatologist is the most appropriate for you at the moment as they can prescribe the Prednisolone, Rituximab drugs etc. to get on top of the flare quickly.

I wish you well.

Regards

Dazler

[Red-head44 in reply to Dazler99]

Thanks Dazler. Yep agree with all you say - seen the specialist yesterday and he said it was 9 yrs since last ENT check so he wanted to double check the state of play now, to ensure minimal deterioration.

Thanks for replying.

[Investigator1]

H Red-head44. To the best of my knowledge (which is limited) sometimes the department you go to is the starting point, for them to say “ok, nothing wrong here, back to Rheumatology we can rule out anything in our responsibility” and that’s not a criticism is just how it works sometimes. When I was first diagnosed in December 2019 I had been having Headaches, Skull tenderness and body pains for about 4 months but the GP was flummoxed. It all came to a head in India on holiday on November 23rd 2019 when I woke up about 7am with severe eye pain and my wife said “God! Your eyes have turned Red” we went home. Straight to GPs where he sent me to Eye Casualty. After 5 hours and various tests they told me there was nothing physically wrong with my eyes apart from Episcleritis but it was being caused by something else, blood tests came back found ANCA PR3 and referred to a specialist. I’m not saying this is the case as far as you are concerned but it’s food for thought Redhead. Nick.

[Red-head44 in reply to Investigator1]

Thanks for taking the time to reply. Yes skull tenderness sums up a lot of days. Dry eyes come with GPA too which of course if been having for a few yrs before diagnosis. It all makes sense once you get a diagnosis. The specialist is chasing up RTX appointment.

[Mooka]

I think it depends on what is the cause of your problems ie if it’s related to vasculitis or not. A CT scan of your head will show if your sinuses are draining properly or not. I’m not sure what type of vasculitis you have but GPA is known to cause significant damage inside your sinuses. There’s some information on the vasculitis U.K. website about this. I have seen a lot of ENT doctors most of them just wanted to give advice and move on. I was lucky enough to see one of the few ENT doctors who do specialise in vasculitis. He suggested a second FESS op. I was reluctant as the first didn’t help but this one did and I’m glad I had it. I would certainly be asking if a CT scan would show up the cause of your pain. Good luck I hope your appointment goes well and you get the answers you need.

[Budapest]

Hi Red-head44,

I am in remission from GPA since 2015. Diagnosed in 2010/11 with upper airways affected & also much permanent damage to the area around my nose.

Last year I had excruciating pain inside my nose. My Vasculitis team referred me to ENT and I am now an open referral to that dept. The consultant showed me how to care for my nose, & the area around it, with regular NeilMed rinsing. The pain was soon completely relieved & it is easier for me to breathe.

Hope this helps.

Budapest

[RP99]

Hi I'm treated by an amazing rheumatologist who sometimes refers me to other specialists e.g. ENT to check out if there's any further damage from flare ups or confirm whether something else is causing the symptoms so not to assume it's always GPA. My rheumatologist is the lead on my case and makes decisions about treatment based on any evidence the other specialists send. I was recently diagnosed with a condition in my ear not related to GPA via ENT.

[Electra1]

Hello there....sorry you're feeling so unwell. I have GPA which has been limited to above my throat. I have a perforated septum due to early effects of GPA and developed asceptic meningitis, along with some other nasty bits and pieces. I've had GPA for about 30 years and it was refractory for the first 10. I had a great of pain in my face centrally, then developed Bells Palsy, an epiglotic stenosis. My current onsultants run a multi disciplinary clinic and as well as being referred to ENT, I was also referred to a Neurology consultant. It was only by being referred to another area of expertise that certain things were ruled out, and other possibilities being ruled in for treatment. In my long experience of GPA, I know it's always ready to pop out where and when you don't expect to....it's also a tenacious little devil. It is very much a multi disciplinary disease and , as you already know, can do a great deal of damage even when left for a short time. My own personal rule is to insist on help and information from my consultants. Part of their brief ( in England, anyhow), is to include the patient in decision making for their health journey. If I hadn't done this in the early days, I might not be writing this rather lengthy tome to you. Tell them what you want or your concerns, if they disagree, get a second opinion elsewhere. The best of luck to you....pain is completely exhausting. Hope you find the answer to your puzzle.

[Red-head44 in reply to Electra1]

Many thanks for your lovely helpful reply and yes, I’ve now got a real specialist although we live in a very rural area - I asked why and apparently there is a cluster of cases around this area hence their need of him. He’s great.