Wegener's GPA and Nasal Discharge Changes

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Since becoming ill last year, my nasal discharge became milky white, opaque and thick. I have allergies so have good amount of nasal discharge down my throat, especially when sleeping. The change in thickness of the discharge has made it so it feels like I'm choking or can't breath properly when it builds up in the back of my throat.

Have gone thru antibiotics in case there was an infection but it didn't help.

Has anyone else experienced anything similar? Did you find out what caused the changes or how to resolve?

About me: 54 years old, located in Northern Virginia, diagnosed December 2016. Still working with my doctors to get my vasculitis into remission. 2nd round of Rituxan will start next  week.

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  • Posted

    I was diagnosed with Wegener's in June, 2009. I was very sick with sinus infections, coughing, and  pains in my feet, legs, and arms. I was in the hospital for eight days before I was diagnosed. I have always had sinus infections.My sinuses were so stopped up that after my biopsey on my sinuses that it took me 3 months to clear the bloody congestion in my sinuses using a syringe and salt water. I hope you don't get this bad. I know this will not help you and I'm sorry. I am sick now and don't know if this a relapse.

    I live in southern Alabama, 4 miles from the Florida line. I am confined to my home

    because of the heat. I only go out to go to the doctor or the grocery store.

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    • Posted

      Hi Sarah

      Thanks for your reply. I do hope you start feeling better soon and that this is not a relapse. 

      I go for a Rituximab infusion next week (had four in Jan this year) and the doctors are hopeful that it will push me into remission.

      I get the feeling that my current sinus situation is going to be my new normal but just wanted to ask around to see if anyone else experienced anything similar and had found a solution.

      Thanks again

      Eileen

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  • Posted

    Dx'd a year ago this month. I have always had sinus and allergy issues, but am not experiencing what you are describing.  My most unpleasant ENT issue is tinnitus.  It got better when I was hospitalized and dx'd, but is now getting louder.  I have had 3 series of post hospital Rituxin infusions.  Hoping that my next ANCA test will show remission.  But, trying to be patient.  My levels were 8 times above normal, so it may take a while.  My docs have recommended Flonase and the use of a neti pot to manage the fluid.  It works pretty well for me.  About to start CBD (cannibus) for my Tinnutitus.  I hope you can get some relief soon.

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    • Posted

      Hi Jac08, 

      Thanks for your reply. I hope the CBD does the trick and provides you with relief from the Tinnitus.

      I'll give the Flonase and neti pot a try.

      My levels were really high as well when I was diagnosed. My doctor described them as "off the charts" high. I'm keeping my fingers crossed that the next infusion is enough to push me into remission because the Prednisone is doing a real number on me after all these months and I'm desperate to get the steroids.

      Are you in US or UK? I ask because my doctor in the US said we had to wait 6 months in between infusions but sounds like you had three within 12 months....?

      Thanks again and good luck

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  • Posted

    Hi. I have just noticed your posting but see it is 5 months old.  I am really interested because I have had really bad nasal discharge since May 2017 which closely followed a flare of up of WG which was mainly in my joints.  I was prescribed prednisolone again (30 mg daily) as well as 20mg weekly of methx and two infusions of retuximab.  Although my rheumatologist is quite happy with my blood results which are indicating the WG is once again going into remission,  I cannot get any relief from all this mucous in my sinuses!  I am just wondering if yours has improved, or whether I am going to have to 'live' with this??

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    • Posted

      Hi Ann,

      Sorry to hear of the new development. I still have the same issues and manage it by taking 10 mg Loratadine (OTC antihistamine). I have had insomnia for many months now ever since I started taking methotrexate and wake up every night around 2 am and use the opportunity to take another Loratadine tablet as they wear off for me after 5 hours. Keeps me from waking up in the morning with a throat coated in the thick discharge and feeling like I could start choking. Also, if I have any medical tests scheduled that will require me to be on my back, I time my Loratadine so that I'm sure it will be working when I need it to.

      In the meantime, my ENT prescribed a nasal spray with steroids called Qnasl. He wants me to go through three of the containers before seeing him again. So far, I don't really see any improvement. I did mention to him that I developed dry eyes and chronic cotton mouth after getting sick and wondered if this issue could be related since the discharge is thicker than usual. He said it was possible but still doesn't know why it happened or how to fix it. He has confirmed that there's no damage to my sinuses that he can see.

       

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  • Posted

    Hi Eileen,

    Thanks for your reply.  I'm sorry to hear you are still suffering and have not seen much improvement.  Some days I think that maybe that things are improving and then bang! back to square one the following day!.  Its so frustrating and can be really embarrassing when in company and I feel I am going to choke on the mucous in my nose and throat.  Anyway, yesterday I went to see my GP and he has prescribed a new type of nasal spray for me to try (a mix of steroid and anti allergy I believe).  I haven't yet collected this from the pharmacy but am hoping there may be some improvement. 

    If I find this has a dramatic effect I will let you know.  Good luck for the future, Ann.

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    • Posted

      Thanks Ann. Hope the new prescription does the trick!  I'll be sure to let you know if I find anything in the future that provides relief.

       

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