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Thread: Diagnosed with GPA in Bonn - Germany

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    Default Diagnosed with GPA in Bonn - Germany

    Hi all,

    I have till now observed and read members' stories and I now think it's time to introduce myself and tell you about how my Wegener's "adventure" started and where I stand now.

    I was diagnosed in Bonn's UKB (University Clinic) after a while in the ICU for what was thought to be a lung infection. Tested two times against Covid-19 and resulted negative, no "influenza" or other common infections so the doctors started to suspect something. I have been under induced coma for two and a half months, starting from the end of March 2020.

    I unfortunately had to be intubated three times, one at the beginning and two others due to lung infections I "picked" in the hospital (one not identified source and the other because of the ventilating machine).

    A tracheotomy had been performed on me and I could not speak for a long time so as to express in a timely ad detailed matter what was going on and noone was allowed to visit me because of Covid.

    I felt abbandoned and had a really hard time. I was saved only by miracle as they keep telling me even now. Nobody thought I would have made it to stay alive. Glad to have proved them wrong

    What worries me the most, now that I am at home and under maintainance treatment with Prednisone and some other medicine, is that during the various operations and apparently since the end of May 2020 I completely lost vision from my left eye. After visiting the ofthalmologist he spoke about the optical nerve being in a bad condition after a probable ischemic episode. On the other hand I entered the hospital with no problem whatsoever related to my eyes. So I find it quite a coincidence that it happened in there. I just wonder if the culprit instead of Wegener's disease, could be the high dose of cortisone and Rituximab that was used during the first days of treatment. I mean, I am grateful to have been saved and that doctors focused on preserving my life. But I would like to know if someone else had similar experiences. And if they found a way to restore vision (my doctor said this is not reversible, being it a nerve damage).

    Also my left ear was diagnosed with hearing loss, associated to GPA's action. But after two months I visited another doctor and folowing a very thorough testing, my ear resulted as being fine and in pretty good conditions for my age (I am 46 now). That was really a relief, even though I still have some disturbance (water moving sensation) into my left ear, especially when I eat and drink.

    Well, thank you once again for letting me join the forum and I will, hopefully soon, write more about my story and condition.
    Last edited by ilias; 09-28-2020 at 03:26 AM.

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    Default Re: Diagnosed with GPA in Bonn - Germany

    @ilias

    Wilkommen!! I’m glad you found us, but sad that you are so sick. GPA is so different in its presentation, and that makes it difficult to diagnose.

    I hope your vision will return. I don’t have eye involvement, but my right ear was affected. I have worn hearing aids for over nine years. They help, but noisy places make it difficult to discriminate what I want to hear from the rest of the sounds.

    I hope you can get back to a nearly normal life. Thanks to great doctors and effective medications, I live a lifestyle that’s similar to my pre-GPA life.

    Let us know your progress.

    Auf wiedersehen!!
    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: Diagnosed with GPA in Bonn - Germany

    Sorry you had to join our distinguished elite group but glad you were able to find us because this is probably the best source of information and support available.

    Several other people who have been on this forum have reported loss of vision in one eye from their bouts with Wegener's granulomatosis. Hearing loss is also a very common result. I lost all my hearing and balance in my one good ear. They also made some attempt to restore or salvage my hearing by prednisone injections into the ear but they were unsuccessful. Two years later once I was in a drug induced remission I was able to have a BAHA installed which drastically improve my hearing but nowhere near normal limits. I was lucky they were able to save my vision although the treatment increased my kidney damage from diabetes.

    It takes a while to recover from intubation even for much shorter periods than yours. Mine only lasted a couple of weeks but it took me over a year to improve my functioning enough to live in a semi-independent living situation. But since you are three decades younger hopefully your recovery will be much faster. It also depends upon the degree of loss and damage to other body organs like lungs and kidneys and whether you have any other additional health impairments.

    I hope you are able to have good access to some rehab therapy. This forum is not as active as it was a few years ago but it is still a very good source of helpful support since it is open and in use 24/7.

    Best wishes for a good recovery and adjusting to your "new normal".
    Knowledge is power! Wisdom is using it to make good decisions!

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    Default Re: Diagnosed with GPA in Bonn - Germany

    I am sorry to hear about your situation but will remain hopeful that you get the needed treatment and recover as much as possible. You have validated my worst fears of this pandemic situation: when I saw the term "ground glass opacity" in Lung CT thrown around with COVID my fear was we would have potential GPA patients not getting the critical care needed during the early course of the disease because the Doctors would assume COVID. I myself had an alveolar hemorrhage and while I got off very easy (no ICU, no Ventilator), the coughing up blood, very low RBC/Hemoglobin, and off the chart Inflammation numbers were terrifying. I was lucky to have an ER doctor who realized something was "off" and referred me to a pulmonologist on his absolute "A" game that ordered about a dozen labs, one including ANCA, the only one that had anything positive (ANCA-C + PR3). As such, here I am.

    As for your eye, I can't comment on the cortisone, but the Rituximab is probably not the reason you lost your vision. On the flip side it is probably why you are alive and here with us, for which we are grateful. There are others that know much more of eye involvement: my biggest eye issues are elevated ocular pressure from the pred (I take Alphagan-P to fight this in spite of getting a letter every month or so from the insurance company begging me to find a cheaper drug).

    I'm still blown away in this era of ubiquitous information that there are doctors that don't immediately reach to potential autoimmune issues once "normal" treatments do not work. Labwork in first world countries is relatively cheap compared to hospitalization costs and/or imaging tests, so blood tests should be on the front line of all diagnostics. When I get older, and have less home duties, I am going to try to do something to raise Vasculitis awareness (not sure where it will go, but it is a dream of mine). We truly need physician awareness so that when a healthy 46 year old woman comes to the ER with lung issues and a very abnormal CT, they realize that Vasculitis is possible cause.

    Blessings to you on the best recovery possible. Be sure to respond to this thread over the coming months to let us know how your recovery is coming along.

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    Default Re: Diagnosed with GPA in Bonn - Germany

    Welcome to the club. Thanks for sharing your story. The ear problem you describe is quite common here and I myself have had a lot of ear involvement. In spite of that my hearing keeps returning to fairly normal. The eustachion tube in my right ear was plugged mostly , for a couple of years. Then a tube was put in and I got my hearing back. I still have the tube. Apparently they can be left in for very long periods of time. I was told that it was likely I would eventually need a tube for the other ear. So far , that ear is doing ok , hearing wise, but it does 'make noise' when my wegener's is active.
    Eye involvement is also pretty common and I myself have some trouble there. It can happen in many different ways. One part, for me, was visual problems that are likely coming from brain involvement. I say likely because there is no definative test or image that can prove it.

    Looking forward to hearing MORE about your situation. We all learn from each other and this illness is a special connection between us.

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    Default Re: Diagnosed with GPA in Bonn - Germany

    Hi Ilias,
    I am so sorry to hear about your treacherous experience, but very glad that you found this wonderful supportive group. There is not another like it on the internet. I peeked into a few on Facebook and found them to be very confusing.
    As you see, this is one very weird disease. It has a multitude of ways to show its ugly face. I have read others with eye and ear issues. One member @Alysia has gone through eye problems, hoping she sees this and will share.
    When I was diagnosed one of my doctors told me that it might take them a while to get me on the right medication, but once there I would begin to regain normalcy. Sometimes I feel like I can conquer the world, but shortly before receiving my next Rituxin infusion I am feeling pretty beat.
    Stress is one thing to avoid if possible. Pacing your daily activity helps too. Many say a healthy diet and exercise helps. This will all start to work into your new normal.
    Have you resumed work? Do you have a supportive family?
    Please keep us posted.
    Masha

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    Default Re: Diagnosed with GPA in Bonn - Germany

    Here I am again.

    Thank you all so much for your answers and your support. Sharing information is always precious, particularly in our condition.
    One of the problems I did not mention is extreme itchiness of the skin which is accompanied by rash (not necessarily). Small spots appear hear and there and eventually disappear after some day.
    This leads to insomnia and pain when the skin comes in contact with clothes. After my vision impairement, itchiness is by far the worst consequence at the moment, as it doesn't let me sleep.
    I did consult my doctor and we tried to reduce or remove some of the medication that could have this as a collateral effect, without any result at the moment.
    I hope that further reduction in medication doses and relative kidney and liver conditions improvement will take this away.
    To give answer to some of the questions, yes I have a very supportive family. I am still in "Arbeitsunfähigkeit" i.e. sick leave and I also have the great luch to have an extremely supportive employer. I also have great colleagues on the whole and particularly in the IT Team which I am part of. I lived in Italy until November 2019. My first 20 years I spent in Athens-Greece where I was born and raised to that age. So after 26 years I decided to move to Germany as I've always wanted that. GPA hit me by the end of March 2020, slightly after having started to work from home because of Covid. So I actually worked less than 4 months and despite that, I was so comforted by my employer and my colleagues.
    My intention is a gradual return based on the "Hamburger Modell" for rehabilitation.

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    Default Re: Diagnosed with GPA in Bonn - Germany

    OK, the itchy feet I can relate to. Sounds small, but bad enough to cause sleeplessness and drive you batty. A while back @marta mentioned magnesium helping for leg pain. When my feet got so itchy I ordered pure magnesium spray from Amazon. At last, relief. I blame everything on prednisone, so this too may be the culprit in the itchy skin.
    By the way, love Italy, have not yet made it to Germany.

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    Default Re: Diagnosed with GPA in Bonn - Germany

    Welcome, Ilias,

    I don't know what I can add except that your situation sounds so familiar, yet different, as is often the case with WG/GPA. I started with a big ear infection at age 58, which I had never had in my life. That was followed by continuing sinus involvement chalked up to allergies, and hearing loss. I took allergy shots for about a year, which seemed to help a little. But it was another case of actually a good doc, my ENT, totally missing the possibility, maybe because, though experienced, he had never had a case of WG, though he knew what it was and ended up getting the diagnosis by nasal biopsy when the time came. Finally it went into my lungs and I was diagnosed and started treatment. But I was only in the hospital overnight, nothing like what you went through! I was very sick and if not caught when it was, feel I would have been in grave danger. Treatment with cyclophosphomide and prednisone got the lung issues under control, and the sinus stuff dragged on longer but I was eventually switched to methotrexate, which I still take, and have never needed RTX. I did have hearing loss in both ears which improved quite a bit but then one ear was reinfected and now is deaf, while I wear an aid in the other. Due to permanent lung damage and continued shortness of breath at times, I must be very careful about Covid, as all of us must. As for the itching, I have it in my scalp, and don't feel it's WG related, but I do have some bad cramps in my legs at night, which can be helped by magnesium, so I am intrigued at the mention of magnesium spray by @Masha, I have a lot of trouble with excess tears and light mucus in eyes, maybe not draining well into the tear ducts, and some itchiness there, but not major eye problems like some have had. I'm so sorry about your loss of vision in one eye. I do have double vision which is probably WG related, due to bone erosion around the eye socket, though that is not for sure, but was speculated by my eye doc and ENT after an MRI. Anyway, you have come to the right place, and the discussions here are a little more personal and educated than on some of the Facebook groups, which can become a free-for-all with a wandering focus. I am on some of those, though. My forum use is less often lately, as I'm distracted by other things, but I sure remember what a saving grace it was when I was first diagnosed. Without it, I would have been lost and alone. I look forward to hearing how things go for you in the near and continuing future.
    Anne, dx'ed April 2011

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