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Thread: Ear, Nose and Eye involvement.

  1. #21
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    Default Re: Ear, Nose and Eye involvement.

    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
    Iím 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 Iím feeling quite alright

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

    Sending you good vibes from Australia

    :-)


    Sent from my iPhone using Tapatalk

  2. Likes Pete, Masha, John S, mishb, Alysia liked this post
  3. #22
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    Default Re: Ear, Nose and Eye involvement.

    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.

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  5. #23
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    Default Possible GPA flareup in the ear

    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.

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  7. #24
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    Default Re: Possible GPA flareup in the ear

    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 thatís 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.
    Life lessons for all of us;

    Never eat at a place called Maís.
    Never shoot pool with a guy called Pop.
    Never try to eat anything bigger than your head.

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  9. #25
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    Default Re: Possible GPA flareup in the ear

    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.
    Last edited by drz; 02-20-2021 at 07:52 AM.
    Knowledge is power! Wisdom is using it to make good decisions!

  10. #26
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    Default Re: Possible GPA flareup in the ear

    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).

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  12. #27
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    Default Re: Ear, Nose and Eye involvement.

    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!

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