Ear, Nose and Eye involvement.

[dalatingod]

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 [emoji1303][emoji3]


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[Pete]

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 wouldn’t respond to the usual treatment. Over the course of disease onset, I had to have my right eardrum lanced twice — 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 aren’t 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 you’ll probably feel better with slower tapers. Tapering too fast may result in the reappearance of disease symptoms or in withdrawal symptoms.

[gunnyl]

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.

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[dalatingod]

Thank you all. I’m 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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[gunnyl]

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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[dalatingod]

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

Infusions and other drugs were mentioned as alternatives if I didn’t 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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[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 [emoji1303][emoji3]


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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.

[dalatingod]

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

I will keep you all posted

Cheers


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[dalatingod]

Update

Lungs are good. No problems there

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

We’ll see.

Thank you all !!


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[John S]

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.

[dalatingod]

John S
Thank you for your comment.

I’ve sporadically been using a Nasal Wash Kit. I haven’t used it on a daily basis thinking that it might irritate my nostrils. It looks like that is not the case.

Thank you !


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[John S]

Early prednisone caused cataracts, that were removed. My eyes used to feel like insects were gnawing on the back of them. I think the Rituxin killed them. My hands had sores all over them, the dermatologist called them "Granuloma Annulare". Rituxin cleared those up too.
The ENT did do surgery on my sinuses to correct issues. The rinse keeps it all clean. I have visited the ENT every 2 months so that she could check up on it and now she says I don't have to return unless a new issue arises. "Keep doing what you're doing and you'll keep getting what you've got."

[JBee]

Hi
I've had high eye pressure for over 20 years, well before weges came along, and have been monitored for that time. Unfortunately my ophthalmologist has confirmed that I now have glaucoma. I asked if the Weges had caused extra problems and he said the pred may have contributed but it was difficult to say. I stopped pred about 2 yrs ago and now only take methotrexate.
Glaucoma has no symptoms early on so I think we should all get regular eye checks, any damage to the optic nerves is permanent but there are good treatments.

Welcome dalatingod, you will learn a lot from the wonderful people on this forum.

[Pete]

JBee

I had SLT on both eyes to relieve the pressure in my eyes about six months before wegs appeared. It’s a laser procedure to open the “drains” in the eyes. It’s painless and recovery is just a couple of hours. Pre-SLT, my pressures were in the mid- to upper-20s. Now (10 years later), they’re in the upper teens.

[JBee]

Hi Pete, I'm having SLT next week on both eyes and have been a bit nervous. Thank you so much for explaining how your procedure went. Fingers crossed I'll have a good outcome too.

[mishb]

Hi dalatingod and welcome to the forum.

This is a great place to find, when you are first diagnosed and are told that it is rare. You think that you are the only person in the world with it, then you find these wonderful people.

In the next few weeks, your methotrexate will probably be increased. They usually start you on 10mg to see how you tolerate it, and then increase you to 20 or 25mg
I was on 20mg for 9 years, and recently reduced back to 10mg more for maintenance than treatment.

Prednisolone drops for the eyes worked wonders for me, but you can't use them for very long.

I also believe that your pred has been reduced too quickly, but it seems to be the new normal these days.
I would speak to your specialist about it. They will increase you back up if your next lot of bloods aren't looking too good, anyway.

The nasal wash system (a fess bottle or something similar) is very good for daily use.
When I was first diagnosed in 2009, I was doing a sinus rinse about 4 times a day, but now I'm lucky if it's 4 times a week. It does get easier.

Sad to see so many Aussie's joining the forum at the moment, but great because it must mean that our specialists are right on the ball now.

I hope you see some improvement shortly.

Take care, and

[dalatingod]

mishb
Thanks so much for your reply
It arrived at the precise moment

I’m seeing my rheumatologist on Monday next week and i will mention the prednisolone dose as well as the methotrexate

Have you had any experience with IMURAN?
I’ve read it is an alternative to prednisolone

Many thanks in advance


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[dalatingod]

JBee thank you !!


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[mishb]

mishb
Thanks so much for your reply
It arrived at the precise moment

I’m seeing my rheumatologist on Monday next week and i will mention the prednisolone dose as well as the methotrexate

Have you had any experience with IMURAN?
I’ve read it is an alternative to prednisolone

Many thanks in advance


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Hi Dalatingod

Sorry, I have been on Methotrexate for the past 9 years and it has worked for me, so there was no need to change to anything else.
Imuran would be an alternative to methotrexate. You would still be stuck with pred I'm afraid.

Good luck on Monday.

[Alysia]

Welcome to the forum. How can we call you ?

In my humble opinion, your WG is too active for mtx or Imuran, and needs a more powerful med like rituximab.

Can you consult a WG specialist ?

Blessings from Israel 🇮🇱

[dalatingod]

Hi Alysia
My friends call me Rob or Robert.
:-)

Thanks for your contribution

Saw my rheumatologist yesterday and she has increased methotrexate from 10mg to 20mg

She also advised to decrease the Prednisolone by 10mg every 2 weeks
I’m currently on 50mg, until i get to 20mg

My last bloodwork results came back quite promising as my inflammation markers have come down from 111 (when in hospital) to 10

My bloodwork has been increased from every 4 weeks to every 2 weeks to closely monitor my response to treatment

At this point in time I’m feeling quite alright

Fingers crossed that my current treatment induces remission and that the maintenance works

Sending you good vibes from Australia

:-)


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[richard052018]

Hey,

If I could pile on to the ocular pressure discussion, I'm using Alphagan P and it has my pressure down in the mid-teens. One drop a day. It is liquid gold (very expensive), but thankfully insurance covers it, and it works.

All the best. This crew is amazing and knows more about GPA than my local rheumatologist.

[jmq]

I have GPA and was in remission for 3 years after 2 years of Rituximab infusions (twice a year). I had Covid in early December and, while it wasn't too bad, (just felt like a respiratory virus / flu) I started having recurring ear pain, sore throat and headaches about a month later. They kept testing me for Covid but I kept getting negative. They treated the ear/throat pain with the typical antibiotics and have been through 3 rounds of antibiotics, steroids and the symptoms keep coming back once I came off the 6-day prednisone pack.
My rheumatologist at Emory (Atlanta, GA, USA) had my blood work done and my ANCA markers are way high. Given all my symptoms lately, he says everything points to me having a GPA flareup but in my ears this time.
My GPA started in my lungs and also affected my kidneys. So far, urinalysis shows nothing in the kidneys. Waiting for chest x-ray results. ENT doctor did a CT-scan of my sinuses and they are clear.

Rheumy doctor says GPA affects the auditory nerve and I could go deaf from one day to the next. He wants to put me on regular prednisone (instead of the baby prednisone pack) while I wait for the infusion. I don't want to go on prednisone but I don't want to lose my hearing. Right now my ears are ringing/buzzing all the time. The pain has subsided a little bit with the baby-prednisone pack the ENT put me on.

Anyone has had a flareup that attacks a different organ?

What symptoms do you have for the ear? So far, I feel I have fluid in one of my ears, plugged feeling, pain, ringing/buzzing (only started a week ago), sore throat (comes and goes), headaches.
ENT doctor says hearing in my right ear for low frequencies has been affected. It was perfectly normal a year ago.

Sometimes I wonder if it's after-COVID weirdness but my ANCA markers are angry. Not sure if COVID brought back my GPA or it was already destined to happen.
I guess I'll have to treat it aggressively and go for the infusion. That's going to exclude me from getting the COVID vaccine any time soon so then I'll have to isolate again until who knows when.

[Peter Marsham]

It sounds like it might be a syndrome called Long COVID, some recovered patients are reporting odd symptoms for months after the infection. Best thing to do is rule out Wegs first if that’s your main worry. Get on the pred and see how it is affected. If the infusion is warranted, get that done first and worry about the vaccine later. After all, us Weggies know how to isolate and mask up, eh? Let us know how you go.

[drz]

I lost my hearing and balance from GPA. It happened overnight. I had a long history of ear problems with several surgeries before the GPA attacks which could have been a precursor to having a serious case of Wegeners. After losing hearing in what was my only good ear I have also had a couple ear infections with burst eardrums. That was painful but the hearing loss happened with no warning or discomfort. Tinnitus comes and goes and sounds or noises with it vary a lot. Eustachian tubes will often feel blocked which seems related to damage to sinuses from GPA.

They tried to restore my hearing with mega dosages (1000 units of solu-medrol) of steroid plus injections of steroids into ear drum but these had no success. It did help me survive the lung and kidney damage as these were also attacked at same time and those even improved a little over the years but my hearing and balance never improved and only get worse with age.

The scary thing about GPA is that it can attack and wipe out an organ like your kidneys or hearing with no warning very quickly so diligent monitoring is your only protection.

[richard052018]

jmq: just curious, you mention 3 years remission but only 2 years of Rituximab. Am I reading this right? Were you taken off RTX maintenance, and now your ANCA numbers are out of sorts? If you were taken off RTX, was that decision made by the doctor? Most respected GPA specialists don't even remotely consider going off maintenance drugs in the first 3 years.

Please provide more details if you are comfortable doing so.

I would think your situation would be much better if you remained on the Rituxan (twice a year). I'm hoping targeted therapies grow in number during the coming decade, and I'll leverage RTX until that time comes (volunteering to destroy one's immune system seems asinine during a pandemic, but as drz mentions, this disease can completely wipe one out with little warning).

[shankxonline]

dalatingod (https://www.wegeners-granulomatosis.com/forum/threads/members/12847-dalatingod)

My GPA journey also started with eye involvement - scleritis. Opth started with prednisolone drops to observe effect for 2 weeks - didn't change the redness and tiredness in the eyes. Then they switched me to Methotrexate tabs along with Prednisone 40mg for a month. Things did subside; but were back up in 3 months.

At that point, switching to injectable Methotrexate (Rasuvo) helped control my eye symptoms significantly. It had been quiet since - though a recent flare up is now attacking my kidneys which is forcing me to the next level - Rituxan - which I am starting next week.

Thought I would share my journey. Hope you feel better soon and meds work for you. Best wishes!