Ear, Nose and Eye involvement.

[drz]

Hi peeps
Hope you are all well. Greetings from Australia. I have been recently diagnosed and soon after i found and joined this amazing group.

My question is related to
Ear - my right ear is where it all started as an ordinary infection. Still hasn’t cleared and can not make it pop. What have you found works for you?

Nose - my right nostril is sometimes blocked. I use an over the counter saline solution. Sometimes it helps but it is not as effective as the medicated nasal sprays. As we all know, problem with those is addiction. Once you get hooked it is hard to wean off. Any recommendations?

Eyes - I was on prednisolone 60mg for the first week (last week). Now that I’m on 50mg (this week), I’ve noticed the redness and dull pain on the top section of the white of my eyes is coming back. Experiences / Recommendations please ?

Thank you in advance


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These are all frequent and common symptoms of GPA and many of these will persist even when you will be considered in remission. Those of us who have been dealing with GPA symptoms and been in treatment for years or decades have generally learned how to cope with these issues. It may vary from person to person so we can only share what has worked for us and your situation might be different
.
Congestion is usually caused by damage to your sinus areas and blockage of your Eustachian tube. The best treatment I have found for me is to do frequent sinus rinses using a machine like the sinus pulse. I have heard from my ENT doctors that you cannot overdo it although I think it could be possible to do so but I have during difficult times rinsed several times a day with no problems.

I take a generic form of Muccinex every day and increase the dosage as needed to keep my sinuses draining without ending up with a sore throat. If my Eustachian tubes are open and working and I have little mucus draining down my throat I can cut back on the medicine or even skip it.

Pain in the eye can result from inflammation of the nerves inside. It is very important that you have your eyes assessed, especially if you are having redness in the eyeball or any thing that is affecting your vision because if the GPA attacks the nerves inside it can result in blindness which can become permanent. One of my initial pre-diagnostic symptoms of GPA was scleritis which was effectively treated with a mega dosage of ibuprofen and a steroid eye drop. It saved my vision.

One of my common residual symptoms now is inflammation of the eyelids which seems to come and go and is related to my dosage of prednisone. And sometimes I will experience pain inside the eye but unless I noticed a change in my vision my ENT doctor tells me I do not need an emergency visit as long as I maintain my current maintenance meds.