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Thread: new member from Philadelphia with nasal crusting (aka: life of the party)

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    Default new member from Philadelphia with nasal crusting (aka: life of the party)

    I guess my GPAstory started 8 years ago now. I was 16 and came home from a weekend ski trip with a cold that made me lose my voice. After a few weeks, my voice still had not come back and my right eyelid was drooping. I didn't think these things were related at all. Come to think of it, I don't remember what I thought about losing my voice but we thought the eyelid drooping was from a stye in my eyelid. After seeing a few opthamologists, one noticed my right pupil was slightly lower than my left. I had a scan (MRI, CT... I don't remember) and it showed a mass between my eye and brain in my right orbit. I had a biopsy done at CHOP in Philly and they said it was a sclerosing pseudotumor. It went away after a heavy dose of Prednisone, which effectively crushed me for 5 months, being that I was a 16 year old girl in high school. My face blew up, I had acne, I gained 50 pounds. I started my Junior year of high school looking and feeling terrible but I didn't really have any idea why. I was also experiencing subglottal stenosis (narrowing of my airway) and I was seeing a rheumatologist but my bloodwork was inconclusive and no one could make a diagnosis at that point.

    I started running and I joined a dance team and lost all of the weight I put on. I finished out high school feeling fairly aside from my lost voice. I got used to hearing, "are you sick? you sound hoarse" and, "wow were you at a concert this weekend?" It took some time to learn to be okay with my new voice, especially since I was a singer my whole life and I had to give that up. I had an evil choir teacher in high school who picked on me for switching from singing soprano to alto. It still makes me angry to think about it. Other teachers were great about it, though, so it wasn't all bad. I missed a week of school Junior year of high school to have surgery to open up my airway. My ENT lasered the area and treated it with a steroid, I believe.

    I went to college at Penn (in Philadelphia), where I was already seeing my ENT and rheumatologist regularly. My voice became status quo at college because people didn't know me before the lost voice. I had another surgery to open up my airway Sophomore year of college (and more steroids and more weight gain). Junior year I started walking a ton and lost all of the weight I put on again. By the end of Junior year I was really happy and feeling almost totally normal (aside from the lost voice). Around March of my Senior year, however, I started feeling very congested and experiencing nasal crusting. I thought it might be allergies but I saw an allergist, who found nothing unusual. I saw my ENT soon after and she seemed alarmed. She said the nasal crusting could be the third strike that would officially diagnose me with GPA. My dad works at the Hospital of the University of Penn and he knew there was going to be a new chair of Rheumatology who was an expert in Vasculitis, Dr. Merkel. I was sort of seeing another Rheum at Penn but I really didn't like him. In October 2013 I became one of Dr. Merkel's first patients in Philly and he more or less diagnosed me on the spot after an hour of telling him my story and his reviewing my medical history. I started a low dose of methotrexate and am now taking 25 mg a week plus folic acid.

    So after 7 years I finally had a diagnosis. Dr. Merkel says he doesn't think I have active disease, which I am very grateful for. Now I struggle with the nose crusting from the scarring that occured in my nose as a result of GPA. I rinse with saline three times a day. I'm constantly applying saline gel in my nose. I need to drink more water to keep from drying out. I know things could be worse for me but it has been a struggle to accept the fact that this is my reality now. I need to think about bringing saline with me on trips and having gel with me in my clutch if I go out to a bar (I'm 24). Drinking alcohol is not so much fun anymore as my stomach is very sensitive and I hate feeling so incredibly dried out by booze. Bloody tissues make up 90% of the trash in my house and I never have enough air. Between the blockage in my throat and the crusting in my nose, I have to really think about my breathing sometimes. I don't want it to be loud (a girl I work with said I was Darth Vader breathing once. rude.) but I also need to make sure I get enough air. My apartment is only reached by 5 flights of stairs and I often have to stop halfway through to regain control over my breath. I get really annoyed when people ask me if I have athsma or something. I like to think people don't notice but I have had several people close to me say something about my breathing. It makes me feel sick and damaged.

    Another thing I struggle with is talking to my friends about this. Like I said before, I like to pretend there's nothing wrong with me and my breathing but sometimes I just want them to understand that I'm doing the best I can. I feel like they think I'm out of shape because I lose my breath on the stairs but breathing itself is just a lot more difficult for me than it is for them. I think when people aren't sick like this, it's easy to take something so simple as your breath for granted. But then, I don't want them to treat me like a sick person. I'm sure this is something others have dealt with... if you have any advice, please share!

    I'm also seeking advice from people who deal with nasal crusting. My ENT just told me to try lanolin in my nose and adding baby shampoo to my saline rinse. Are there any other tricks people use? I'm hoping if I can really get a handle on the crusting that I can improve my ability to breathe. I really miss being able to run. In the past year I have taken up yoga and have found that extremely beneficial to me in many ways. I have learned how to command my breath and I'm also getting stronger. At this point, I guess I know the GPA isn't going away so I need to really take care of my body to reduce the amount of stress I put it through. I'm trying to eat more vegetables and less processed food. From what I've read lately, it seems your diet can really affect inflammation in your body.

    While I would never wish this on anyone, I'm not sure I would have learned this early on how important it is to take care of myself. At least there's a silver lining to this, maybe?

    Anyway, sorry for the wall of text. Most people I encounter have no idea what GPA is. I'm really looking forward to connecting with others who share similar struggles with me. I have a strong support system in my life but there are times when I feel like I either can't open up to people or I don't want them to see me in a certain way. Not everyone has had to deal with problems like this so I can't expect them to really understand what I'm going through. And in some ways, I feel like this because I don't want GPA to be the defining factor of who I am. It is certainly part of who I am, but it's not everything.

    Aaaand I'm done. I swear I'm not usually such a serious person. I promise I won't always post epic novels on here!

  2. #2
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    Welcome Jess, such a story and at a young age...sheesh. I don't mind old guys like me getting this stuff, but not fair to you young'uns. Anyways, ask lots of questions on here...lots of knowledgeable, experienced, and caring peeps on here...we all have different stories centered around this wonderful lil disease. Your docs sound on top of things as they should be! I like your attitude towards WG...it is simply another part of whom we have become...best to you!
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


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    Quote Originally Posted by jesslove215 View Post
    I'm also seeking advice from people who deal with nasal crusting. My ENT just told me to try lanolin in my nose and adding baby shampoo to my saline rinse. Are there any other tricks people use? I'm hoping if I can really get a handle on the crusting that I can improve my ability to breathe.
    Hi Jess, a fellow cruster here! LOL! (-8

    My crusting used to be HORRIBLE. I've learned that VOLUME and FREQUENCY are the two things that helped me. Lots of water/saline at least twice a day. I run 3 liters of saline through a Waterpik twice a day. Yes, that is over 2 gallons a day!! The past two months, I've discovered a new method of loosening the crusts. Using the Waterpik on the lowest setting, I put it in one nostril and pinch the other one shut. I let my nose and sinuses fill with the warm saline, and when I feel it tickle in the back of my throat, I stop the water flow. I then hold the saline in there for 30-45 seconds and then blow it out fairly aggressively. This method, I also used when I had an antibiotic rinse. My ENT says this technique is really great, and he wished he'd thought of it. My sinuses have taken a remarkable turn for the better in the months that I've been using the flooding technique. I am the only patient my ENT has that is doing such an aggressive rinsing routine. Others use maybe one 8oz NeilMed bottle a day, but that's it. Quite frankly, I would love to go back to those days, but if I do, the crusts would build up so heavy that I would not be able to breathe--just like you.

    Another thing to consider is what I found out lately. You can have a flare up and it will stay in the sinuses and not register anywhere on the ANCA test scale. My sinuses were/are my trigger/indicator of when I am flaring.

    One other thing that helped me when I was a crusted up mess was a good nose picking by my ENT at every visit. He went in with suction and forceps and removed as many as he could until I couldn't stand it any longer. Basically, he would work until the numbing spray wore off. An endoscopic procedure at every visit can get expensive if you have to pay a percentage of it. I have great insurance and a really low max out of pocket, so insurance paid for the endoscopy procedures without question.

    I've done baby shampoo in the rinse, liquid nebulizer steroids in the rinse, Alkalol nasal wash diluted in the rinse, and have had decent luck with all of them when I was using them. Now, I am just using saline, but the last rinse I do with the Waterpik, I add about 1/4 cup of the Alkalol solution. It helps to keep the sinuses and nose open for a little while after rinsing.

    Good luck, and feel to ask any other questions, either here or via private message.
    MikeG-2012

    "You never know how strong you are until being strong is the only choice you have"


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    Welcome Jess, no crusting here only the loss of Dr. Merkle, I had an appointment with him and when I went to see him, he was gone. He was at Boston Medical and left for Philly. Any way we now have Dr. Monach. You have one of the best Weg Doctors in the country, you're in good hands. Best of luck going forward.
    Dale
    Dx Aug, 2009 Remission June 2010 until 8/1/2014

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    Welcome to the forum, Jess. And don't worry about the wall of words.... many of us have done it, and yours was well written and interesting. You have been through a lot in the last 8 years. All the above advice is good, especially Mike's on the crusting. It sounds like you have a good handle on how to take care of yourself and it's great that you have such an excellent doc overseeing your case. I hope you will continue to read and participate on the forum. It is really an excellent group of people with a lot of knowledge and support. Cruise the archives, too, to see past posts on various topics. I'm glad you found us.
    Anne, dx'ed April 2011

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    thanks for sharing your tough and so touching story, Jess
    welcome to the family. we understand what you are going through and hold your hand.
    please continue to write.
    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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    Hi Jess and welcome to you, from me all the way from Australia.

    Yes we hail from all over this great world and therefore someone is on here anytime you may need to ask questions, have a yell, share a laugh etc.
    We all certainly know exactly what you are going through

    A couple of things that caught my eye, in your lovely written post, were:
    - Dr Merkel doesn't think you have active disease
    I'm sorry, but if you are still filling the rubbish bin with bloody tissues, and if your nose is still crusting, and if you still can't breathe properly or walk the stairs,
    then your GPA/WG is not yet under control, but it is certainly not in full swing.....which is something to be thankful for.

    - Going to a bar and drinking alcohol
    You really shouldn't be drinking alcohol whilst on Methotrexate (MTX).
    MTX may cause liver damage if taken over a period of time and drinking alcohol can speed up/double the risk to your liver.
    You can have the occasional drink, every now and then, but it is not recommended.......but people do
    This could be the reason your stomach feels so bad.
    It is easy to say NO and just have water or soft drink.
    I used to tell people that I was a reformed alcoholic and now I don't touch the stuff

    All the best of wishes to you and we look forward to many more posts
    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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    Michelle, I am in remission and always have bloody nose with crusting. And also have trouble breathing and can't do stairs. I have to disagree there. Just because one has these symptoms does not indicate active disease.

    And welcome Jess. Glad to hear you have Pete as your doc.
    Phil Berggren, dx 2003

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    Thanks so much for this! I tried the flooding technique and it was awesome. I do think the crust needs a little time to soften up before it will come out. I'm feeling better today than I have in awhile! Also, I just picked up lanolin last night from Target. It took me forever to find it... I guess I should have checked the breast feeding section first haha

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    Good luck on getting that crust out Jess. Just irrigate lots with a Waterpik and like Mike and I do.
    Phil Berggren, dx 2003

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