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Thread: Ear, Nose and Eye involvement.

  1. #11
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    Default Re: Ear, Nose and Eye involvement.

    John S
    Thank you for your comment.

    Iíve sporadically been using a Nasal Wash Kit. I havenít used it on a daily basis thinking that it might irritate my nostrils. It looks like that is not the case.

    Thank you !


    Sent from my iPhone using Tapatalk

  2. #12
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    Default Re: Ear, Nose and Eye involvement.

    Early prednisone caused cataracts, that were removed. My eyes used to feel like insects were gnawing on the back of them. I think the Rituxin killed them. My hands had sores all over them, the dermatologist called them "Granuloma Annulare". Rituxin cleared those up too.
    The ENT did do surgery on my sinuses to correct issues. The rinse keeps it all clean. I have visited the ENT every 2 months so that she could check up on it and now she says I don't have to return unless a new issue arises. "Keep doing what you're doing and you'll keep getting what you've got."
    Last edited by John S; 11-05-2020 at 04:42 AM.

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  4. #13
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    Default Re: Ear, Nose and Eye involvement.

    Hi
    I've had high eye pressure for over 20 years, well before weges came along, and have been monitored for that time. Unfortunately my ophthalmologist has confirmed that I now have glaucoma. I asked if the Weges had caused extra problems and he said the pred may have contributed but it was difficult to say. I stopped pred about 2 yrs ago and now only take methotrexate.
    Glaucoma has no symptoms early on so I think we should all get regular eye checks, any damage to the optic nerves is permanent but there are good treatments.

    Welcome dalatingod, you will learn a lot from the wonderful people on this forum.

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  6. #14
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    Default Re: Ear, Nose and Eye involvement.

    @JBee

    I had SLT on both eyes to relieve the pressure in my eyes about six months before wegs appeared. Itís a laser procedure to open the ďdrainsĒ in the eyes. Itís painless and recovery is just a couple of hours. Pre-SLT, my pressures were in the mid- to upper-20s. Now (10 years later), theyíre in the upper teens.
    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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  8. #15
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    Default Re: Ear, Nose and Eye involvement.

    Hi Pete, I'm having SLT next week on both eyes and have been a bit nervous. Thank you so much for explaining how your procedure went. Fingers crossed I'll have a good outcome too.

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  10. #16
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    Default Re: Ear, Nose and Eye involvement.

    Hi dalatingod and welcome to the forum.

    This is a great place to find, when you are first diagnosed and are told that it is rare. You think that you are the only person in the world with it, then you find these wonderful people.

    In the next few weeks, your methotrexate will probably be increased. They usually start you on 10mg to see how you tolerate it, and then increase you to 20 or 25mg
    I was on 20mg for 9 years, and recently reduced back to 10mg more for maintenance than treatment.

    Prednisolone drops for the eyes worked wonders for me, but you can't use them for very long.

    I also believe that your pred has been reduced too quickly, but it seems to be the new normal these days.
    I would speak to your specialist about it. They will increase you back up if your next lot of bloods aren't looking too good, anyway.

    The nasal wash system (a fess bottle or something similar) is very good for daily use.
    When I was first diagnosed in 2009, I was doing a sinus rinse about 4 times a day, but now I'm lucky if it's 4 times a week. It does get easier.

    Sad to see so many Aussie's joining the forum at the moment, but great because it must mean that our specialists are right on the ball now.

    I hope you see some improvement shortly.

    Take care, and
    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

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  12. #17
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    Default Re: Ear, Nose and Eye involvement.

    @mishb ;
    Thanks so much for your reply
    It arrived at the precise moment

    Iím seeing my rheumatologist on Monday next week and i will mention the prednisolone dose as well as the methotrexate

    Have you had any experience with IMURAN?
    Iíve read it is an alternative to prednisolone

    Many thanks in advance


    Sent from my iPhone using Tapatalk

  13. #18
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    Default Re: Ear, Nose and Eye involvement.

    @JBee ; thank you !!


    Sent from my iPhone using Tapatalk

  14. #19
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    Default Re: Ear, Nose and Eye involvement.

    Quote Originally Posted by dalatingod View Post
    @mishb ;
    Thanks so much for your reply
    It arrived at the precise moment

    I’m seeing my rheumatologist on Monday next week and i will mention the prednisolone dose as well as the methotrexate

    Have you had any experience with IMURAN?
    I’ve read it is an alternative to prednisolone

    Many thanks in advance


    Sent from my iPhone using Tapatalk

    Hi Dalatingod

    Sorry, I have been on Methotrexate for the past 9 years and it has worked for me, so there was no need to change to anything else.
    Imuran would be an alternative to methotrexate. You would still be stuck with pred I'm afraid.

    Good luck on Monday.
    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

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  16. #20
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    Default Re: Ear, Nose and Eye involvement.

    Welcome to the forum. How can we call you ?

    In my humble opinion, your WG is too active for mtx or Imuran, and needs a more powerful med like rituximab.

    Can you consult a WG specialist ?

    Blessings from Israel 🇮🇱
    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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