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Thread: Ear, Nose and Eye involvement.

  1. #1
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    Default Ear, Nose and Eye involvement.

    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 hasnít 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 Iím on 50mg (this week), Iíve 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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  3. #2
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    Default Re: Ear, Nose and Eye involvement.

    Hi @dalatingod

    Welcome to the club nobody wants to join. Glad you found us, though.

    My GPA journey started similar to yours with an ear infection that wouldnít respond to the usual treatment. Over the course of disease onset, I had to have my right eardrum lanced twice ó about six weeks apart. The second time, they inserted a tube/grommet to allow fluid to drain. I was also taking bactrim 3x weekly and that eventually got that issue under control. I have had tinnitus for about 40 years, and the disease aggravated that and also my senso-neural hearing loss. I now wear hearing aids. They help, but arenít a perfect solution.

    My nasal involvement was minimal. Antibiotics cleared whatever involvement resulted from the disease. I take antihistamine and decongestant daily, and that works well for me. I do a saline rinse occasionally. Some people use alkolol (not alcohol) in their rinse to help more.

    I never had eye involvement.

    The only guidance I can give you about prednisone is that youíll probably feel better with slower tapers. Tapering too fast may result in the reappearance of disease symptoms or in withdrawal symptoms.
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

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    Default Re: Ear, Nose and Eye involvement.

    Are they just treating you with Prednisone?

    My issues started in my ears, destroyed the eustachian tubes. I eventually needed tubes in my ears although I am down to one tube now.

    You need to see an ophthalmologist for your eyes, it could be the Prednisone, it could be the disease. I went blind before I was diagnosed so take this very seriously. I regained my vision due to the efforts of a good ophthalmologist.

    If your doctor is not treating this aggressively, you need to find another doctor.

    I learned how to be my own advocate through this process. An incompetent doctor almost cost me my life.

    Sent from my HD1907 using Tapatalk

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    Default Re: Ear, Nose and Eye involvement.

    Thank you all. Iím also taking Methotrexate 10mg. Once a week. It sounds like the Prednisolone is being reduced too quickly. All your comments are extremely appreciated.


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    Default Re: Ear, Nose and Eye involvement.

    Prednisone can cause pressure issues in the eyes, WG can also cause pressure issues with the eyes.
    When you are on Prednisone you need to have regular visits with Ophthalmology to check the pressure. Find a good ophthalmologist and establish a relationship.
    Did they use Cytoxan or something else in your initial treatment? Methotrexate is a maintenance drug but not an initial treatment drug for WG. I didn't respond well to it as a maintenance drug.


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    Default Re: Ear, Nose and Eye involvement.

    Gunnyl - many thanks for your comment. Only 2 x drugs Iíve taken so far: Prednisolone and Methotrexate.

    Infusions and other drugs were mentioned as alternatives if I didnít respond well to this initial treatment.

    My local hospital has already organised follow up appointments with:
    Respiratory Unit - seeing them today
    Eye Specialist - seeing them today
    Rheumatologist- seeing them next week

    I will discuss my current situation with the 1st team I see today.

    Thank you very much for your input.


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    Default Re: Ear, Nose and Eye involvement.

    Quote Originally Posted by dalatingod View Post
    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


    Sent from my iPhone using Tapatalk
    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.
    Last edited by drz; 11-04-2020 at 10:19 AM.
    Knowledge is power! Wisdom is using it to make good decisions!

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    Default Re: Ear, Nose and Eye involvement.

    Hi drz
    Thank you very much for this awesome information.
    Iím seeing my eye specialist today.
    I will mention the eye steroids

    I will keep you all posted

    Cheers


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    Default Re: Ear, Nose and Eye involvement.

    Update

    Lungs are good. No problems there

    Eyes : pressure is ok. I was given some Prednisone Forte, for the redness and mild pain.

    Weíll see.

    Thank you all !!


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    Default Re: Ear, Nose and Eye involvement.

    I am lucky enough to be on Medicare and near great teaching hospitals. I go to Loyola Hospital in Chicago and Cleveland Clinic. Prior to diagnosis I was treated by several specialists, Heart, nose, eye, rhuemy, dermatologist and others.
    Eventually, a very special doctor, Villa-Forte at Cleveland Clinic diagnosed GPA and put me on my current regimen. Rituxin every 6 months, pentamadine monthly, no prednisone, daily sinus rinse with NeilMed.

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