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Thread: Daughter here trying not to drop her basket

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    Unhappy Daughter here trying not to drop her basket

    Hello. I have been a member here for a couple weeks now, reading your posts, and learning so much from your experiences (both challenges and triumphs) with WG. My father has been on the journey to getting diagnosed over the past two months. In such a short time it has been a roller-coaster for my family. This will be quite long, but I'd like to paint the entire picture (plus I'm a rambler!):


    ~ Dad was diagnosed with shingles in November just before Thanksgiving after noticing he was having the classic signs/symptoms of rash and pain on one side (left side of back and abdomen). Doctor prescribed a round of acyclovir and it cleared right up. No mor pain at all and only the remnant of his rash.


    ~ Around this time, maybe a few days before maybe a few days after his shingles diagnosis, he mentioned he was having tooth sensitivity in his back upper teeth and back lower teeth. He passed it off as somehow related to his shingles virus, because at his dental appointment in early Nov., his dentist described his gum and teeth as a mouth of a 40 year-old. A week or so went by and his gums around those back teeth became inflamed and he started describing that when he ran his tongue over those areas it felt like hamburger meat. My dad has always been meticulous about oral care almost to the point of obsessive, so he went back to his dentist to get it checked out. The dentist told Dad he literally had no earthly idea what was going on with his gums and teeth. He sent Dad straight over to a periodontist that same morning.


    ~ The periodontist (who has been in practice 30+ years) told Dad he had never seen anything like what was in his mouth before, made a call to an ENT, and sent him straight over to see the ENT that same day. Of course, Dad was getting scared and anxious at this point.


    ~ The ENT said his lesions did not look cancerous, but took several biopsies to confirm. He also swabbed for a nasal culture due to my dad's sinus inflammation, stuffiness, and sinus drainage that had recently begun. By this point he had also begun a dry cough, headaches, and tearing and redness of his left eye. The ENT said he really didn't know what could be causing his symptoms and told Dad to come back in 4 days for the biopsy results.


    Dad went back on Christmas Eve and was told by the ENT that the biopsies were negative for cancer and the nasal culture showed no growth. He (the ENT) felt that his mouth sores and inflamed sinuses were being caused by a virus, so he put him on acyclovir and told him to come back in 10 days.


    ~ Over the next 5-6 days on acyclovir, my dad's mouth didn't get any better. I told him I thought he should feel at least SOME better at that point. He went back to the ENT the next day and the ENT said he honestly didn't know how to treat him, but referred Dad to a pathologist at the dental school nearby.


    ~ A couple days later my dad saw the pathologist who took more tissue samples and swabs (no blood was drawn). Four days later (a Friday) Dad went back to the pathologist for results and was told that after looking at slides under the microscope, he is certain my dad has Wegener's Granulomatosis. He told my dad that he should see his primary care doc ASAP and begin further testing as well as treatment. The pathologist then wrote a prescription for a 50mg taper of prednisone and handed Dad a poorly photocopied and very frightening article on Wegener's.


    ~ Monday morning Dad went to his PCP to let him know in person of his diagnosis. His doc immediately referred him to a rheumatologist who has experience treating Wegener's patients.


    ~ My sister and I went with Dad to see the rheumatologist the very next day (Jan. 21). I felt good about her. She spent almost 2 hours with us, thoroughly physically examining my dad and educating us. She said it is common to have sinus problems with WG, but not as common to have gum inflammation like Dad has been experiencing. She said she wasn't going to treat him according to the pathology results alone, so she walked us to the lab where they drew 10 vials of blood and took a sample of Dad's urine. He then had a chest x-ray, a chest CT and a CT of his sinuses.


    ~ We returned to the rheumatologist's office for my dad's follow up 10 days later (this past Friday Jan. 31). She informed us of the following regarding his tests:


    Blood tests were all within normal range with the exception of two:
    -PR3 ANCA positive
    -TB Gold In-tube test "indeterminate"

    Urinalysis normal

    Chest X-ray clear

    CT of sinuses showed inflammation and thickened lining (worse on left)

    CT of chest with contrast showed one 1.5 cm density on the posterior apex of left lung. No adenopathy or pleural effusion.


    At this point all I could focus on was the chest CT finding and I felt as if the floor was going to open up a swallow me. I don't exaggerate when I say right then I stopped being my dad's 35 year-old daughter and turned into a frightened, panicked little girl.


    The rheumatologist began talking about referring Dad to a pulmonologist to investigate his lungs further before she felt comfortable starting his therapy. She spoke of "limited Wegener's" and questionable microscopic polyangitis and how the indeterminate TB test result made her suspicious as well. To appease me I think (I told her how miserable he feels with his sinusitis, headaches, and cough and Dad agreed), she prescribed him an antibiotic and prednisone 20 mg daily. Of course after 5 days on such a small dose of pred, he feels no better. His appointment with the pulmonologist is tomorrow (Feb. 5) and his rheum. called him today and notified him that she has scheduled a follow up with his ENT on Thursday.


    Dad, Mom, my sister, and I are all so anxious and fearful, especially about the frightening chest CT. What a punch to the gut. :-( Dad has always been active and healthy and still appears so at 64 years old...he just doesn't feel that way.


    I apologize for such a long post. I feel so scared for my Dad. What makes this hardest is seeing him worried...and afraid...even though he's doing his best to be positive. I appreciate anyone who reads this and can offer me some words of wisdom and encouragement.

    Lindsey

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    Hi Lindsey,

    Thank you for posting this. I'm sorry your dad is so sick. From what you have said I would definitely say your dad has Wegs. He should be starting treatment now. High dose pred, 60mg, and at least Imuran, but I would push for Rituximab.

    Anyway, usually biopsies are not conclusive, but when the pathologist says he is certain it is Wegs then it is hard to argue that. His teeth, nose, sinus, eye, etc symptoms all seem like Wegs to me. Then there is the 1.5cm thing in the lung, that could be Wegs too. And also the positive PR3 points to Wegs. It is odd though that the other blood work like WCC, ESR and CRP would be in normal range.

    Where does your dad live? If you are near a major center then I would suggest going there.
    Phil Berggren, dx 2003

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    Phil, thank you for your advice. I agree about my dad starting treatment now. I am definitely anxious for him to start. I think the delay is due to the indeterminate tuberculosis test result and density found on his lung CT. The rheumatologist was steadfast about wanting his lungs checked first before starting him on high-dose immunosuppressants.


    No, we are not near a major center but going to one is very possible financially for my parents. We wanted to get a firm diagnosis first, but now we have been sidetracked (and sucker-punched) with a terrifying lung "density." I am a nervous wreck.

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    Hi Lindsey and welcome to the site. It is certainly scary getting this all at once. It must be very overwhelming. With that being said you've come to the right place for some support and answers about the disease. What part of the country do you live in? There are definitely centers that have excellent vasculitis care. Such as Cleveland Clinic, Johns Hopkin and Mayo. Also check this out Patient Information Book It is a patient guide that gives easy to understand explanations and a list of meds that are used to treat the disease. This guide is on the Vasculitis Foundation web site which also has a list of doctors that treat vasculitis. Most of all hang in there. They probably won't be able to give you a diagnosis of the lung spot without a biopsy which I'm sure the pulm doc will explain to you tomorrow. Good luck and keep us posted.
    Cindy



    Earth is just a stopover and whatever you achieve there is only a small part of the deal. The Afterlife Of Billy Fingers


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    Quote Originally Posted by windchime View Post
    Hi Lindsey and welcome to the site. It is certainly scary getting this all at once. It must be very overwhelming. With that being said you've come to the right place for some support and answers about the disease. What part of the country do you live in? There are definitely centers that have excellent vasculitis care. Such as Cleveland Clinic, Johns Hopkin and Mayo. Also check this out Patient Information Book It is a patient guide that gives easy to understand explanations and a list of meds that are used to treat the disease. This guide is on the Vasculitis Foundation web site which also has a list of doctors that treat vasculitis. Most of all hang in there. They probably won't be able to give you a diagnosis of the lung spot without a biopsy which I'm sure the pulm doc will explain to you tomorrow. Good luck and keep us posted.
    Hello, Cindy. Yes, this is all very overwhelming and I'm not even in his shoes. But he's my Daddy and seeing him weakened like this makes it feel like there is an elephant sitting on my chest. Thank you for replying to my post. You are so kind and helpful.

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    Welcome, Lindsey. I'm so sorry you have a reason to be here but it will make you and your family feel less alone with this disease and give you hope that your dad can pull through this and get back to something like his old self. Quite a few of us on here were dx'ed at around your dad's age and are doing OK, or even very well. I'm glad you have already gotten a lot out of reading our posts, and hope they've had the power to comfort you at times. You may also do searches to find posts on specific aspects of WG. I can feel how scared you are for your dad, but perhaps that will lessen as the diagnosis process is completed and he begins treatment. I think that will ease some of your anxiety. It is good that your parents have the ability to travel to one of the major centers, and I hope they do. Getting some treatment started in the meantime would be good, though, and your docs can consult with the experts if need be. Best of luck to your dad and the family.
    Anne, dx'ed April 2011

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    Welcome Lindsey, glad you found us and have done some looking around...now that your dad has WG this site will become more informative and supportive than you know. Your dad, if he feels OK with it, may want to get on also, if for no other reason than to look at the discussions, etc. I am 65, have had WG dx for 2 1/2 years, had chest xrays that showed 'broken glass' essentially, sinuses that did and still do look like hamburger (it really is an apt description!), leg & foot neuropathy...hmmm, checking...that'll do for now. My presenting symptoms were like your dad's...purpura for no reason, aches and pains roaming the bawwwwwdy, bloody sinuses, etc. My pulmy upon meeting me the first time told me that he didn't get to meet many people with lungs like mine...they were dead. Whatever now, I am here now, lungs cleared completely, numbers normal as can be, am learning to ride the waves of WG...better some days than others...but now I'm doing what I want for the most part, don't travel so well anymore and not really anxious to do that much anymore...except to see the kids and grandkids. In essence, your dad will do well and he'll feel better, but the first 5-6 months are scary for many...so many thoughts, drugs, decisions, and so on. I have what is termed WG Lite also...that is NOT an apt description, but docs have seen much worse! LOL! Glad you are supporting your dad, and remember it isn't just him either...WG tends to involve family...so all of you need info and to talk about it whether it be on here or wherever. Be in charge of your docs, ask questions, get answers, make lists, and you'll learn all the other stuff! Best to you, please keep sharing so all of us can learn.
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


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    Hi Lindsey, being diagnosed early, is a huge plus. Its usually when a doctor thinks its a sinus problem, or some kind of flu, and takes too long to get you on the drugs, that can manage or cure WG, that you will have major problems. The rest of it is exactly as Don describes above. All the best.

    Regards Woz....

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    Hi Lindsey, I was diagnosed with WG last march with similar symptoms. After months of fatigue and reoccurant colds I got what appeared to be an infection on my gums. I saw a dentist who prescribed antibiotics. It got significantly worse day by day. Tried two more types of antibiotics to no avail. It took two weeks in hospital in a severe downward spiral before they reached a diagnosis. I soon found out that WG was 'rare' and difficult to diagnose. Also the type of physical presentation was a rarity within. I had 2 'spots' on my lungs as well - the biopsy was inconclusive. After treatment a further scan showed these spots significantly smaller - this happened within a few months. It is all very scary and be careful where you look for info. Sounds like they may have caught it before major damage is done which is lucky in the wegeners world. I was given one shot of cyclo, then rituximab and prednisone....and azathioprine. Crappy drugs but excellent treatment. How is your dad doing with the diagnosis? You will always worry but maybe less with the right information. My doctors aren't well versed with WG but from what I've experienced and in what I've read here they're doing well. I hope answers come easy for you as they are the peace of mind. Stay strong.....

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    Hi Lindsey I would like to say welcome to the best group in town, however since we are from all parts of the world - Welcome to the best group on this Planet

    I'm so glad that you have found us and that you have also been doing some ground work for your dad.

    A lot of us were told, prior to a WG diagnosis, that TB needs to be considered ........for your dad's lungs, I am certain it will be WG

    Keep learning as much as you can and I wish, your dad, good health in the very near future.
    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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