User Tag List

Likes Likes:  0
Results 1 to 6 of 6

Thread: Hoarseness

  1. #1
    Join Date
    May 2012
    Posts
    3
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default Hoarseness

    It's been a long while since I was active with the forum but I have had some changes since I was on here last. Roughly a year ago I developed a sore throat and lost my voice. Turns out I had strep. A month later the voice still hadn't returned to normal and I began to have difficulty with breathing. Turns out it was sub glottic stenosis w a 30% obstruction. I underwent treatment w Rituximab. I have been in remission since. A few weeks ago I developed a raspy voice w no other symptoms and so I saw my rheumy. All labs were normal. She put me on Bactrim and prednisone. I improved over the course of the prednisone. A week ago, after completing the prednisone, the voice is hoarse again and I have some cough w phlegm occasionally. Still no other symptoms. But my question is can the prednisone alone control this type of flare? (Since the prednisone had cleared up my symptoms while I was on it) Or- should I pursue Rituximab again- which would be my third round of it since my original diagnosis. I have moved to a rural area w no specialists so I will have to travel to Denver for treatment. This complicates my situation a bit. Any experience w flares associated with tracheal stenosis would be appreciated.

  2. #2
    Join Date
    Nov 2014
    Location
    Central Pennsylvania
    Posts
    196
    Post Thanks / Like
    Mentioned
    5 Post(s)
    Tagged
    0 Thread(s)

    Default

    Hi! I also have a stenosis. I had one surgery and ive had 2 flares since that were treated with prednisone alone. My blood work looked clear the whole time tho so my ENT does not go by my blood work rather what it looks like thru a scope. I have been considering rituxan tho because as soon as my pred gets tapered, some symptoms come back. Thay only last a few days. My drs are both wondering if rituxan would be a better option....i dont know if im being any help I would want an ENT to scope me and see what it looks like. I have been able to clear it up with pred...it just takes a couple months and alot of yucky side effects!

  3. #3
    Join Date
    May 2012
    Posts
    3
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Yes I had an awesome ENT in Dallas- he is the one who actually diagnosed me!, he always lookers a scope and always sent me for ct scan. But- Ive moved and I don't have him now. Which is scary. The doctors in this community are family practice docs and not too great. So I'm starting the prednisone again- to see if it can simmer this down. I guess I was thinking if the pred won't actually clear it up maybe I shd just skip and go straight to Rituxan. After the Rituxan I had zero symptoms- it was awesome. Have been in remission 13 months til now. Thank you for your help! Good to know that maybe the pred can slow it down til I can find an ENT and Rheumy in Denver.

  4. #4
    Join Date
    Feb 2014
    Location
    Pennsylvania, USA
    Posts
    49
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Hi Alhambra! I would recommend Rituximab personally because I went through a similar experience and didn't have any immunosuppression and I think it would have really helped me. I lost my voice when I was 17, when I was first seeing doctors about my symptoms, and they gave me prednisone to help with another issue (tumor above my eye). At that point, they didn't know I had Wegener's so they didn't know to put me on something like Rituximab. Unfortunately for me, my voice loss is now permanent. IF this is something that keeps coming up for you, it could be the Wegener's at work so you want to nip it in the bud if you can! I'm not a physician so I'm totally speculating but I've also found we know our own bodies the best and when something doesn't feel right to me, it's usually because something isn't right.
    Diagnosed October 2012

  5. #5
    Join Date
    Dec 2013
    Location
    Mobile, Alabama
    Posts
    256
    Post Thanks / Like
    Mentioned
    1 Post(s)
    Tagged
    0 Thread(s)

    Default

    Hi Alhambra, I am a returning member, and am currently going through what I feel is a flare, but I also left all my specialists when my Husband divorced me 5 yrs ago, and am in the process of trying to get back up there by a 4 hr trip as needed with the help of one of my sisters. My family has watched my medical care go down because most drs here only have HEARD of wegeners. But anyway, I have had lung issued for a yr now. Never had any problems before, except when diagnosed. Tumors were shrunk by Cytoxan and prednisone in first yr, and never returned. But this past yr has been infection on top of infection in lungs with different diagnoses.....asthma, pneumonia, unknown infection traveling, etc. then Bronch. showed I had MRSA and Echoli in my lungs. Had a month of IV Picc line inserted and gave myself Vancomycin, and another strong antioboitic. Lungs look clear, but now have same skin rash on my legs as when diagnosed, AND have been hoarse for a YEAR!!! Several sore throats, etc. When rash broke out, my rheumy sent me to EENT who said I had inflammation of unknown origin making me hoarse. Soooooo.......Im still hoarse. But Im on 40mg of Prednisone a day. Leg rash is slowly fading, but I FEEL like there is something going on. Im still hoarse. I have been on inhaler for a year, still on Qvar 80, daily, and an emergency inhaler. I have maroon phlem I cough up daily. No bright blood, but my throat is a mess, as is my sinuses (25yrs of wegeners can destroy a lot) I am afraid, but have much family support. I love reading forum am and glad to be back. Every person who tells what is going on with them can help us learn the possibilities of what may be happening to us. Wegeners is CRAZY!!! I always type totally way too much. Sorry, but so glad to read your post, and hope you get the help you need. Leaving drs who know us is stressful, and going to new ones who only know what books say is very scary. Best of luck, and Blessings. Lilly
    Life is a Gift~ Lilly

  6. #6
    Join Date
    Dec 2010
    Location
    Melbourne, Australia
    Posts
    2,704
    Post Thanks / Like
    Mentioned
    5 Post(s)
    Tagged
    0 Thread(s)

    Default

    Hey Lilly,

    Great to see you back here but sorry that you had reason to come back.

    Happy 50th Birthday lovely.
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

Bookmarks

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •