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Thread: Nasal pain and/or facial pain

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    Question Nasal pain and/or facial pain

    Do you suffer from facial and/or nasal pain? I've been checked out by my ENT recently and he gave me the all clear. My medications are working (joint pain is down and blood tests look better) but the facial pain and nasal pain keep bothering me. It seems like OTC pain relievers don't help relieve the pain. It's a weird burning and stinging sensation in my nose and pressure, fullness, and pain in my cheeks. I thought that the pain would go away when the meds were working and my nasal passages looked clear.

    Besides nasal rinses, do you have any recommendations for feeling better? How do you deal with chronic pain?

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    Hi,
    I am sorry for your pains
    I had nasal pains (causing facial pains) for years. it was wg-activity. eventough the joints were not aching, and the labs were ok, the nasal pain was to most stubborn.
    only couple of months after getting my first rtx, the pain started to go away, but leave behind a saddle nose.
    how to handle it ? I just lived with it, trying to ignore it and not to let it control me.
    I don't rinse because rinses affecting my ears badly. but warm long shower allways relieved some pain.
    do you still have nose "productions" ? blood ?
    I hope you will feel better soon
    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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    I don't have production or nose bleeds but I have blood in my tissue when I blow my nose. My ENT wasn't too worried about the small bits of blood though. I think medicine lags behind today. We need to focus on prevention whether it's preventing disease activity and subsequent saddle nose or kidney or lung damage. I think that there must be damage going on at a micro level that isn't visible to the eye if I'm experiencing this pain but it looks okay.

    I'm glad your pain went away after a couple months of treatment. I'm sorry it left you with a saddle nose. I admire your courage of living with it and not letting it control you. Thank you for sharing your experience with me!

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    thanks for your good words
    I am sorry to say but I think that as long as there is still blood coming out of the nose, this way or another, it means that the wg is still active and/ or smoldering.
    others around, please correct me if I am wrong
    how long are you taking your mtx and how much of it ?
    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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    I've been on mtx since October 2013 but it was in low doses at first. My body didn't react well in the beginning. I've been on 20 mg in pill form between December-January. February-current I've been on 25mg in injectable form once a week. I believe that is the most that is recommended. My rheumatologist seemed reluctant but open to idea of prescribing rtx but my ENT thinks that is too much for me based on his evaluation. My ENT thinks I should give the mtx more time to work.

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    as far as I know it is big enough doze and long enough time to start to see results.
    the question is if you can see improvement over time, and then it means that it works for you. it takes time to beat that wg
    but if you don't see improvement (that was my case, mtx did nothing to me) or not enough, then it is time to consider rtx.
    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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    I had some pretty serious sinus pain for the first few months of treatment, first thing in the morning was always the worst. It was a constant ache on the tops of my cheeks, and a stabbing searing pain behind my eyes. It took a few months of Cytoxan and prednisone to get my wegeners under control. Once it was under control though, things started healing and the worst pain started going away. If over the counter pain meds are not putting a dent in it, you should talk to your doctor about that. As much as I dislike prescription pain meds, sometimes they are needed.
    "It takes less muscles to smile than it does to frown!"

    -A quote to a doctor from me, in the hospital, while giving him a Bells Palsy smile (I was on some gooooood drugs at the time)

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    My joint pain is better and my fatigue is lessening. I'm glad to have improvements but I wasn't having nasal pain before so I was nervous and saw my ENT. Only time will tell I guess?

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    maybe time will tell...
    but don't wait too much....
    if it is getting worse don't wait at all....
    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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    The morning is the worst! I guess the nasal passages get dry overnight as we sleep. I started using a humidifier at night to help. I also have pain behind my eyes occasionally. Given that my lungs and kidneys are not involved, my ENT said there is not a good reason for me to go on ctx especially because I may want to have children in the future.

    I feel like OTC meds never help with pain even before I had Wegeners so it's not surprising that it doesn't help now. I will talk to my doc about potential pain relievers
    . I don't want anything that would be tough on my kidneys (bc of GPA) or liver (bc of mtx). I know some research suggests that exercise, biofeedback, mediation, massage, mindfulness, and other therapeutic activities can be better at managing chronic pain than pain killers. If only they provided immediate relief...

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