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Thread: Diagnosed in Dec 2017, just now getting around to saying hello

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    Default Diagnosed in Dec 2017, just now getting around to saying hello

    Hello, I've visited here previously but now I decided to share my story and join the forum.

    I was 32 at the time of my diagnosis, something that came as a total surprise to me, as I imagine it was too many of you. I had been having some intermittent sinus issues, join pains and such. I saw an ENT and had my tonsils removed due to large white patches and constant sickness. Having those removed at 31 years old is no fun at all.

    Anyway, before October of last year (2017), I was dealing with a mystery cough that wouldn't go away. It seemed to be getting worse, and it started to feel like I wasn't able to take full breaths. One morning I coughed up a large blotchy blob of phlegm that contained a lot of blood. I was worried by this, so I took a picture. I showed my wife who immediately said, "Yeah go to the hospital". I went to the urgent care close to my office, and she prescribed me doxycycline telling me that it should resolve within a few days. It got worse despite the meds and I called my GP, who advised me to go to the UC by my house. There, they took a chest X-ray and found that I had pnuemonia. They put me on levaquin and advised that I call them should I experience any joint pain. Fast forward a few days and my wife, 2 year old son and I are at dinner. We eat our food, and as we go to leave I can't stand. My knees hurt so bad that I couldn't walk to the car. I force myself to hobble to the passenger seat of my car and ask my wife to drive. We get home, I take pain meds and lay down. After calling that Doc the next day, she tells me to discontinue the levaquin and drink lots of water to flush the meds out of me. After a day or so of unrelenting pain (this is just before Thanksgiving at this point) my GP asks to see me. She says I've probably developed tendon damage from to the levaquin and refers me to an orthopedist and orders another chest x-ray to see the progress. I get it and it's gotten much worse. My GP tells me to go be admitted to the hospital. Once there they put me on strong IV antibiotics and I am still coughing, and coughing up blood. I then notice that my urine has changed to a dark apple cider like color and it smells bad. (Sorry, I don't mean to be graphic or gross). The doc says that it's most likely from the IVs, and says I've improved and should spend Thanksgiving at home with my family. They discharge me Wed evening. I spend most of Thanksgiving asleep, and I am exceedingly weak. I get up Friday PM and don't feel right. I haven't eaten in about 24 hours so I try and eat, but I just can't force it down.

    I wake up at like 2am Saturday morning and feel like I'm drunk. I can't breathe and can't see straight. I stumble to the floor, get as dressed as I can, tell my wife that I'm leaving and after getting no more than a groan, I crawl to the garage and my car. I get in, turn the air on as high as it would go and sit there trying to catch my breath. Finally I do, I leave and head to the ER/Same hospital I was just in which is 6 minutes away. Upon leaving I call the ER to tell them that I'm coming and that I can't walk. They meet me at my car with a wheelchair and take me inside. They immediately take me back and start an IV. I keep passing out and they put me in the ICU as my O2 sats are in the 70s. My wife arrives in the morning (Saturday AM) and the doc tells her they don't really know what is going on. Fast forward to Sunday evening and they tell me I'm not improving and my chest x-ray shows 90% blockage. They choose to transport me to the specialized ICU about 15 miles away. That load me up in an ambulance, call my wife and away we go.

    I remember getting there vaguely, and seeing the doctor. They tell me they need to intubate me because forced O2 isn't helping me. I tell my wife I love her, the doctor says "see you in a few hours" and they put me under.

    I wake up confused, having no idea what as going on. I can't speak, something is in my throat. I can't move, maybe I'm restrained? I see a nurse and hear some beeping and odd noises. From the right of the room, I see my wife walk to me. She tells me not to talk, that I have a trach in. She tells me not to freak out, but it's been 4 weeks. I've been in a coma for that long as they figured out what was wrong. She then tells me that I have Wegners, I went into renal failure and respritory failure, my heart stopped twice and that they had to put me on ECMO as a last ditch effort to save me. Then she tells me I can't move because I have been on such high doses of meds and that I have atrophied so much. I had been on plasmapheresis, four doses of Rituxan, and had multiple transfusions, along with being placed in a proning bed while being on life support. I really didn't know what to say.

    After I stabilized, they took me out of the ICU, and I went to inpatient rehab just after Christmas. I went in as a Max assist (where you cannot do anything for yourself). After 15 days of 3-4 hours a day of PT/OT, I walked out of the hospital on Jan 10th. I then went home and started my recovery. Jan 28th I went back to work and continued outpatient rehab until mid March.

    As of now, my GPA is under control. My blood tests have shown no PR3 markers. When I was first in the ICU, my PR3 was 328 which is insanely high. I am currently on methotrexate, folic acid and will have another dose of Rituxan in a few weeks as it has been about 6 months since all of this happened. Unfortunately for me, I have developed severe rheumatoid arthritis like symptoms. My rhuemotologist says that can happen and we just have to deal with it as it comes. Thankfully I am alive though. So that's the important part.

    So that's my story. So hello everyone!

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    Default Re: Diagnosed in Dec 2017, just now getting around to saying hello

    Quote Originally Posted by Mattieus View Post
    Hello, I've visited here previously but now I decided to share my story and join the forum.

    I was 32 at the time of my diagnosis, something that came as a total surprise to me, as I imagine it was too many of you. I had been having some intermittent sinus issues, join pains and such. I saw an ENT and had my tonsils removed due to large white patches and constant sickness. Having those removed at 31 years old is no fun at all.

    Anyway, before October of last year (2017), I was dealing with a mystery cough that wouldn't go away. It seemed to be getting worse, and it started to feel like I wasn't able to take full breaths. One morning I coughed up a large blotchy blob of phlegm that contained a lot of blood. I was worried by this, so I took a picture. I showed my wife who immediately said, "Yeah go to the hospital". I went to the urgent care close to my office, and she prescribed me doxycycline telling me that it should resolve within a few days. It got worse despite the meds and I called my GP, who advised me to go to the UC by my house. There, they took a chest X-ray and found that I had pnuemonia. They put me on levaquin and advised that I call them should I experience any joint pain. Fast forward a few days and my wife, 2 year old son and I are at dinner. We eat our food, and as we go to leave I can't stand. My knees hurt so bad that I couldn't walk to the car. I force myself to hobble to the passenger seat of my car and ask my wife to drive. We get home, I take pain meds and lay down. After calling that Doc the next day, she tells me to discontinue the levaquin and drink lots of water to flush the meds out of me. After a day or so of unrelenting pain (this is just before Thanksgiving at this point) my GP asks to see me. She says I've probably developed tendon damage from to the levaquin and refers me to an orthopedist and orders another chest x-ray to see the progress. I get it and it's gotten much worse. My GP tells me to go be admitted to the hospital. Once there they put me on strong IV antibiotics and I am still coughing, and coughing up blood. I then notice that my urine has changed to a dark apple cider like color and it smells bad. (Sorry, I don't mean to be graphic or gross). The doc says that it's most likely from the IVs, and says I've improved and should spend Thanksgiving at home with my family. They discharge me Wed evening. I spend most of Thanksgiving asleep, and I am exceedingly weak. I get up Friday PM and don't feel right. I haven't eaten in about 24 hours so I try and eat, but I just can't force it down.

    I wake up at like 2am Saturday morning and feel like I'm drunk. I can't breathe and can't see straight. I stumble to the floor, get as dressed as I can, tell my wife that I'm leaving and after getting no more than a groan, I crawl to the garage and my car. I get in, turn the air on as high as it would go and sit there trying to catch my breath. Finally I do, I leave and head to the ER/Same hospital I was just in which is 6 minutes away. Upon leaving I call the ER to tell them that I'm coming and that I can't walk. They meet me at my car with a wheelchair and take me inside. They immediately take me back and start an IV. I keep passing out and they put me in the ICU as my O2 sats are in the 70s. My wife arrives in the morning (Saturday AM) and the doc tells her they don't really know what is going on. Fast forward to Sunday evening and they tell me I'm not improving and my chest x-ray shows 90% blockage. They choose to transport me to the specialized ICU about 15 miles away. That load me up in an ambulance, call my wife and away we go.

    I remember getting there vaguely, and seeing the doctor. They tell me they need to intubate me because forced O2 isn't helping me. I tell my wife I love her, the doctor says "see you in a few hours" and they put me under.

    I wake up confused, having no idea what as going on. I can't speak, something is in my throat. I can't move, maybe I'm restrained? I see a nurse and hear some beeping and odd noises. From the right of the room, I see my wife walk to me. She tells me not to talk, that I have a trach in. She tells me not to freak out, but it's been 4 weeks. I've been in a coma for that long as they figured out what was wrong. She then tells me that I have Wegners, I went into renal failure and respritory failure, my heart stopped twice and that they had to put me on ECMO as a last ditch effort to save me. Then she tells me I can't move because I have been on such high doses of meds and that I have atrophied so much. I had been on plasmapheresis, four doses of Rituxan, and had multiple transfusions, along with being placed in a proning bed while being on life support. I really didn't know what to say.

    After I stabilized, they took me out of the ICU, and I went to inpatient rehab just after Christmas. I went in as a Max assist (where you cannot do anything for yourself). After 15 days of 3-4 hours a day of PT/OT, I walked out of the hospital on Jan 10th. I then went home and started my recovery. Jan 28th I went back to work and continued outpatient rehab until mid March.

    As of now, my GPA is under control. My blood tests have shown no PR3 markers. When I was first in the ICU, my PR3 was 328 which is insanely high. I am currently on methotrexate, folic acid and will have another dose of Rituxan in a few weeks as it has been about 6 months since all of this happened. Unfortunately for me, I have developed severe rheumatoid arthritis like symptoms. My rhuemotologist says that can happen and we just have to deal with it as it comes. Thankfully I am alive though. So that's the important part.

    So that's my story. So hello everyone!
    Hi Mattieus,

    Welcome to this great forum.
    Thanks for sharing your story. I'm also a weginner, diagnosed about the same time.
    I'm glad things are under control, what you went through was as close of a call as it gets.

    My blood boils when I read stories such as yours (and mine (when I will get to jot it down and post it)).

    It's about the sheer incompetence of these doctors.
    We all were just a simple blood test away from getting the correct treatment early enough to prevent all of that damage. Who knows how many lives were lost (or are currently being maimed) that could have been easily prevented with competent medical care.

    I think (again I'm a Weggie newbie), that active RA is active Wegs and, I think also that it needs to be dealt as such (if it can be at all).

    Ed.
    Last edited by seied; 06-01-2018 at 04:55 AM. Reason: (typos)

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    Default Re: Diagnosed in Dec 2017, just now getting around to saying hello

    Welcome Mattieus,

    You certainly have experienced just how serious this condition can get!

    How are your kidneys now? Methotrexate isn't recommended for Wegener's if there's kidney involvement.

    I also suffer from RA symptoms. Fortunately, the symptoms do subside for long periods (only to return for equally long periods).

    I hope you remain in remission and the RA symptoms begin to ease soon.

    Now the Drs know that you have Wegener's, you should never end up anywhere near the state you have recently been through, so try not to worry and allow this condition to rule your life.
    Diagnosed April 1995

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    Default Re: Diagnosed in Dec 2017, just now getting around to saying hello

    Quote Originally Posted by gilders View Post
    Welcome Mattieus,

    You certainly have experienced just how serious this condition can get!

    How are your kidneys now? Methotrexate isn't recommended for Wegener's if there's kidney involvement.

    I also suffer from RA symptoms. Fortunately, the symptoms do subside for long periods (only to return for equally long periods).

    I hope you remain in remission and the RA symptoms begin to ease soon.

    Now the Drs know that you have Wegener's, you should never end up anywhere near the state you have recently been through, so try not to worry and allow this condition to rule your life.
    Yes, I wonder if you're on Prednisone, and if not, how did you get off of it so quickly.
    Also, you may want to make sure that your doctors have are plan to get a consultant who's an expert on Wegeners.

    Ed.

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    Default Re: Diagnosed in Dec 2017, just now getting around to saying hello

    Welcome Mattieus,
    You have come to the right place. You will find a plethora of information here, and answers from people who have been down all sorts of roads. Your experience has been a treacherous one. My blood is boiling that you were shuffled around to such an extreme. The medical community must have practices in place to test undiagnosed patients for AI diseases.
    The replies you have already received from other members are right on. Are you on Prednisone? How much? Also, my Rheumatologist took me off Methotrexate prior to my Rituxan infusions.
    Have you given any thought to seeing specialists under one umbrella. In the US the Cleveland Clinic has a great reputation. I live in the south, and should my condition worsen, I will go to Duke, another place in the Top Ten for Wegeners. From this site I have learned the importance of having doctors who know and have dealt with this disease often. Your body has been hit in every direction, sounds like you need a team of qualified physicians working together.
    This can all be overwhelming, insurance, doctors, work, family....then they tell you to keep stress out of your life.
    There is assistance out there to fill in what your insurance doesn’t cover. Also, I cannot confirm this, but I have been told that Wegeners qualifies for disability.
    I am glad you have joined us. There is a fine line between not overdoing things and becoming paranoid. If I leave you with one final thought it is go to GREAT DOCTORS.
    Masha

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    Default Re: Diagnosed in Dec 2017, just now getting around to saying hello

    Quote Originally Posted by Mattieus View Post
    Hello, I've visited here previously but now I decided to share my story and join the forum.

    I was 32 at the time of my diagnosis, something that came as a total surprise to me, as I imagine it was too many of you. I had been having some intermittent sinus issues, join pains and such. I saw an ENT and had my tonsils removed due to large white patches and constant sickness. Having those removed at 31 years old is no fun at all.

    Anyway, before October of last year (2017), I was dealing with a mystery cough that wouldn't go away. It seemed to be getting worse, and it started to feel like I wasn't able to take full breaths. One morning I coughed up a large blotchy blob of phlegm that contained a lot of blood. I was worried by this, so I took a picture. I showed my wife who immediately said, "Yeah go to the hospital". I went to the urgent care close to my office, and she prescribed me doxycycline telling me that it should resolve within a few days. It got worse despite the meds and I called my GP, who advised me to go to the UC by my house. There, they took a chest X-ray and found that I had pnuemonia. They put me on levaquin and advised that I call them should I experience any joint pain. Fast forward a few days and my wife, 2 year old son and I are at dinner. We eat our food, and as we go to leave I can't stand. My knees hurt so bad that I couldn't walk to the car. I force myself to hobble to the passenger seat of my car and ask my wife to drive. We get home, I take pain meds and lay down. After calling that Doc the next day, she tells me to discontinue the levaquin and drink lots of water to flush the meds out of me. After a day or so of unrelenting pain (this is just before Thanksgiving at this point) my GP asks to see me. She says I've probably developed tendon damage from to the levaquin and refers me to an orthopedist and orders another chest x-ray to see the progress. I get it and it's gotten much worse. My GP tells me to go be admitted to the hospital. Once there they put me on strong IV antibiotics and I am still coughing, and coughing up blood. I then notice that my urine has changed to a dark apple cider like color and it smells bad. (Sorry, I don't mean to be graphic or gross). The doc says that it's most likely from the IVs, and says I've improved and should spend Thanksgiving at home with my family. They discharge me Wed evening. I spend most of Thanksgiving asleep, and I am exceedingly weak. I get up Friday PM and don't feel right. I haven't eaten in about 24 hours so I try and eat, but I just can't force it down.

    I wake up at like 2am Saturday morning and feel like I'm drunk. I can't breathe and can't see straight. I stumble to the floor, get as dressed as I can, tell my wife that I'm leaving and after getting no more than a groan, I crawl to the garage and my car. I get in, turn the air on as high as it would go and sit there trying to catch my breath. Finally I do, I leave and head to the ER/Same hospital I was just in which is 6 minutes away. Upon leaving I call the ER to tell them that I'm coming and that I can't walk. They meet me at my car with a wheelchair and take me inside. They immediately take me back and start an IV. I keep passing out and they put me in the ICU as my O2 sats are in the 70s. My wife arrives in the morning (Saturday AM) and the doc tells her they don't really know what is going on. Fast forward to Sunday evening and they tell me I'm not improving and my chest x-ray shows 90% blockage. They choose to transport me to the specialized ICU about 15 miles away. That load me up in an ambulance, call my wife and away we go.

    I remember getting there vaguely, and seeing the doctor. They tell me they need to intubate me because forced O2 isn't helping me. I tell my wife I love her, the doctor says "see you in a few hours" and they put me under.

    I wake up confused, having no idea what as going on. I can't speak, something is in my throat. I can't move, maybe I'm restrained? I see a nurse and hear some beeping and odd noises. From the right of the room, I see my wife walk to me. She tells me not to talk, that I have a trach in. She tells me not to freak out, but it's been 4 weeks. I've been in a coma for that long as they figured out what was wrong. She then tells me that I have Wegners, I went into renal failure and respritory failure, my heart stopped twice and that they had to put me on ECMO as a last ditch effort to save me. Then she tells me I can't move because I have been on such high doses of meds and that I have atrophied so much. I had been on plasmapheresis, four doses of Rituxan, and had multiple transfusions, along with being placed in a proning bed while being on life support. I really didn't know what to say.

    After I stabilized, they took me out of the ICU, and I went to inpatient rehab just after Christmas. I went in as a Max assist (where you cannot do anything for yourself). After 15 days of 3-4 hours a day of PT/OT, I walked out of the hospital on Jan 10th. I then went home and started my recovery. Jan 28th I went back to work and continued outpatient rehab until mid March.

    As of now, my GPA is under control. My blood tests have shown no PR3 markers. When I was first in the ICU, my PR3 was 328 which is insanely high. I am currently on methotrexate, folic acid and will have another dose of Rituxan in a few weeks as it has been about 6 months since all of this happened. Unfortunately for me, I have developed severe rheumatoid arthritis like symptoms. My rhuemotologist says that can happen and we just have to deal with it as it comes. Thankfully I am alive though. So that's the important part.

    So that's my story. So hello everyone!
    Hi and welcome Mattieus,

    So glad they realised what it is and started to deal with it, hindsight is a wonderful thing and if we knew the half of what happens to us in advance we could prevent so much..

    Glad your getting the care you need and just reminds me how I was at the start of my trip down the Weggie road, although like yours in many was not quite as bad, i did chuckle about dragging myself to cars as I have done that so many times before dianosis, so good on you for fighting the fight so well...

    Ben ;-)



    Sent from my SM-G930F using Tapatalk
    Ben


    Diagnosed in 2013


    Never, never, never give up! (Winston Churchill)

    What screws us up the most in life is the picture in our head of how it is supposed to be.... (Not found out yet)

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    Default Re: Diagnosed in Dec 2017, just now getting around to saying hello

    Thank you for all of the kind replies. To answer a few questions:

    I left the hospital taking Levimir (for blood sugar wackiness due to extended high doses of steroids), Lebetalol and another blood pressure medication (for the same reason as the levimir), 35mg of prednisone daily, along with potassium. Eventually as my rheumatologist weaned me from the steroid, I came off of everything. Around mid to late Feb I was off of all medication. Around early May I started to present RA symptoms. That is when the methotrexate was introduced. My rheumatologist then suggested that I resume a small daily dose of prednisone to help as the methotrexate builds in my system to relieve the joint pain. All the while my PR3 levels have been normal with my inflammation markers elevated (most likely from the joint swelling). I am still scheduled to have a 2 unit Rituxan infusion sometime Mid-June.

    Additionally, I live in the Atlanta area and really do like my GPA doc. He is a really nice guy who has years of GPA experience as well as around 20 or so Wegner's patients at this time. He doesn't sugar coat things but he does explain everything he does and explains his reasoning behind it. He also visited me multiple times in inpatient rehab as well.

    Again, thank you all for your warm welcome, I do greatly appreciate it.

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    Default Re: Diagnosed in Dec 2017, just now getting around to saying hello

    Oh, I forgot to address your questions: My kidney function is at 100% luckily now. The nephrologist who oversaw my care in the ICU was *stellar* and he was the one with the hunch of what I had. He addressed it so quickly that it minimized any granulomas or damage to my kidneys. My doc has been very vigilant about checking my blood and urine for all levels before prescribing anything.

    I do sincerely appreciate the well wishes.

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    Default Re: Diagnosed in Dec 2017, just now getting around to saying hello

    100% kidney function, that's great! Your kidneys will thankfully be fine dealing with methotrexate.
    It was my nephrologist that diagnosed me. The fact that my kidneys packed in probably saved my life, as my mum had already been told that I wouldn't be leaving hospital alive before the nephrologist got involved.
    I don't want to scare you, but my kidney function also returned massively (not sure if it was 100%, I was 17 at the time and wasn't concerned). But over the last 23 years I've had a few relapses and each time my kidney function took a permanent drop. So please seek help promptly if symptoms reappear.

    There's lots of recommendations for various GPA/Wegener's specialists, but you seem to be in good hands and if you're happy with them, then stick with them.
    Diagnosed April 1995

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    Default Re: Diagnosed in Dec 2017, just now getting around to saying hello

    Welcome to the forum, Mattieus, and thank you for sharing your story. Thanks God they eventually treated you well enough to bring you back to your wife and family.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

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