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Thread: New Weggie, with paralyzed vocal cords

  1. #1
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    Default New Weggie, with paralyzed vocal cords

    I'm Russell,
    August 2014
    I started with fluid in ears, bursting ear drum, severe headaches, 11-7-14 my right vocal cord paralyzed. I was still able to speak and eat liquid. No diagnosis from 3 different ENTs, one prescribed prednisone and antibiotics, one prescribed nose spray, the other kept having me return after 3 weeks.
    After several MRIs of my head and neck, no diagnosis by my GP, ENTs, or Radiologist.
    12-19-14 my left vocal cord paralyzed leaving unable to eat or drink so I went to ER got fluid IV and they sent me home. My wife called a friend that has close connection with my previous GP and told her what's going on, she immediately called Dr. Gusland and told him the story. the next day he had a bed at the Hospital and several Doctor's to see me, including a local Neurologist from UCLA and a ENT I had been seeing.
    after 1 week at the local hospital and no diagnosis it was decided that I go to UCLA for higher care.

    12-27-14 at UCLA Neurology stroke ward, team of 6 doctors and inters.
    PET Scan found inflammations on my throat, upper spinal cord cutting off several nerves such as my vocal cords. Also a spot on my lung which was biopsied 1-8-15. This is when the rheumatologist team had determined they where 85% sure I had Wegener's GPA.

    Finally a diagnosis, 1-10-15 infusion of Rituxan, still on prednisone, got flu shot, and pneumonia shot and sent home same day.

    So happy to be home I went straight to bed 12:30 am, woke up an hour later aspirating and coughing so hard I collapsed my biopsy lung. Ambulance ride to local hospital. Next day Pneumothorax tube inserted in my chest, spent a week in hospital. By this time I have lost 35 lbs. My only source of nutrition is from my feeding G tube, and IV while at hospital.

    2-18-2015
    Now I'm home, still no voice, had 3 more Rituxan infusions over the last month, got a pic line to get TPN additional nutrition since I have been losing on average one pound a day and was at 109 lbs. from my original 170 lbs. when I was in shape before all this.

    I am really curious how, when, and if my voice will come back on its own, Once it does I will be able to eat and gain my weight back and start feeling normal again.
    I thought I was in pretty bad shape until I read may other post on this site, I have to say looking back, I know I did and am still going through a lot, but I feel much better about my situation now, assuming I get my vocal cords working normal again.

    Thank you for reading and hopefully replying.
    Russell
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    Last edited by Russell Bro; 02-19-2015 at 08:45 AM.

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    Wish you the best Russell!!️.Be positive


    Inviato dal mio iPhone utilizzando Tapatalk

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    Hi Russell,

    Wow!! You've had quite a spell with our dumb disease.

    Rituximab is a great drug, but it's probably not the best for induction therapy that will knock down your symptoms. You may want to ask your docs about using cyclophosphamide to act more quickly. If they put you on it, stay well-hydrated and urinate when you feel the urge. One of cyclophosphamide's side effects is bladder cancer, and the metabolates are irritating to the bladder.

    How much prednisone are you taking? If you're still very ill, you may need more to better control inflammation. When I was first diagnosed, I was on 60 mg/day. Between this and the cyclophosphamide kicking in, my appetite recovered really well -- too well as I regained the 25 lbs I lost at disease onset plus another 20 in addition.

    I hope your vocal cords and appetite recover quickly.

    Also, feel free to ask questions, seek advice, vent your frustrations, and celebrate recovery. There are folks from all over the world on here 24/7/365. You should get responses with a couple of hours, if not sooner.

    Keep us posted!
    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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    Pete,
    Thanks for the advice, I will ask my rheumatologist about cyclophosphamide see what see has to say. I don't get any more treatments for another 6 months then I get 4 Rituximab infusions over a month time. I am currently on 60 mg a day of prednisone.
    It's not that I don't have a appetite since my vocal cords are both paralyzed I can't swallow any thing even my own spit. this is why I am so anxious to find a way to get them active again.

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    The thing about Rituximab is it's slow acting -- typically 4-6 weeks before you notice anything...
    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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    Welcome to the gang
    What a dramatic welcome you've had to Wegners !!!!
    Hope you get your voice back really soon . And god speed


    Sent from my iPad using Tapatalk

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    Hi Russell and like Pete said " WOW " . First I am glad you found this website but sorry for the fact that you had to. I have never heard of this effecting someones vocal cords like yours. Also like Pete said rtx takes awhile to get the full effect,I would definately ask them about ctx ( cytoxin ) that is what many of us had started out on and maybe even give you a higher dose of pred for the inflamation.I hope you start to feel some results soon.
    Life isn't about how you survive the storm, but how to dance in the rain !

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    Hi Russel! I have a tracheal stenosis that my ENT calls very odd for wegeners. Then again everything with wegeners is odd But mine is in the folds of my vocal chords so when i have a flare i lose my voice. I did not experience paralysis tho. I have heard of the option of injecting the sight with steroids...havnt had to do that myself. Curious if you have a good team of doctors? I think the others are right that rituxan is good but doesnt work fast enough for what youre dealing with. Hope you find some help on here! Im sure you will. These people are all so nice

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    Debra,
    thank you, for the reinforcement and second opinion. I am so ready to eat by mouth. while I was at UCLA I was craving fruit smoothies I ordered a NutriBullet blender, so far it works great for my friends and family. some day I will get to enjoy it.

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    Why are you not getting treatments for another six months?
    Dale
    Dx Aug, 2009 Remission June 2010 until 8/1/2014

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