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Thread: Just diagnosed with GPA in last week

  1. #1
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    Default Just diagnosed with GPA in last week

    Like many of you, I have had a run of very bad health (sinus infection, terrible cough w/laryngitis, then severe aching joints and swollen thyroid) for months, all while trying to work. Everything was treated as a discreet problem, until I started fussing and demanding to see an ENT and get tests for inflammation. I have worked for 17 1/2 years in an inner-city mission/shelter, helping people with welfare problems, tenancy issues, etc. I figured all those years in a high-stress environment had caught up with me - and I was on the verge of retiring anyway. (I am fortunate that, unlike many of you who got it when you were younger, GPA waited until I was 64 years old to strike).

    Long story short - the ENT, to his credit, threw a fit and put me into the ER, writing a very strong letter directed to the respirology department. While everyone was slightly rolling their eyes (thinking this ENT was a little over the top), this did end up with my getting a diagnosis of GPA - which I probably wouldn't have got until much later, when more damage had been done. (It doesn't seem to have got to my lungs or kidneys.) So although my parting gift on my retirement date, Dec. 19, was the diagnosis of GPA, I am very thankful everything worked out as it did.

    Right now, I'm on 50 mg. of prednisone for a bit, then as supposed to drop down to 25 mg. We'll see how it works. At least I can walk again!!! (I had a whole month where I was living on Tramacet, while going to work/limping around - it was awful.) I am also very grateful that, if I have to have a disease like this, I live in the time and place we live in - if this had happened in the 1950s, or if I lived in a 3rd world country...well, we all know what that would mean.

    I look forward to hearing/reading your stories and thoughts - it's good to have community in this odd situation.

    Susan

  2. #2
    ozterry Guest

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    Hi and welcome to our family. Like you, I am older than a lot of people on here (67) and thanks to a very astute ER, I was diagnosed quickly and received treatment before any real damage was done. I am now down to 20 mg of prednisone and a daily dose of 150 mg of Endoxin (cyclophosphamise). Apart from excessive fluids, tiredness, shortness of breath, and very swollen feet and legs, all is well in my world. Of course I have other medical conditions that are not helped by the addition of becoming a weggie, but I am coping as good as can be expected. I hope you too, have similar results and quickly. But you will find everyone here, very supportive and helpful.

    cheers
    Terry

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    Hi Susan and welcome.

    I am another from Oz, so as you can see, you will find people on here any time of the day to help if and when required.

    I love my ENT for nearly the same reason as you seem to love yours, and I'm glad you persisted to get the referral to see one.

    What part of the world are you in, just out of interest.
    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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    Hi Duffy,

    I got hit with this dumb disease at age 64 also. Now 68 and taking the advice of the pulmy who helped diagnose me: Take your meds as directed and live your life to the fullest. I've been fortunate that I now lead a normal (pre-wegs) lifestyle.

    Good luck!
    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

  5. #5
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    Thanks to everyone for their kind comments. I am hoping, Pete, that I will get to the stage where you are. I'm fairly fortunate, Terry, that I don't seem to have any other major health issues (other than that I could stand to lose some weight and get in shape!). Michelle - I am in Vancouver, Canada.

    It's reassuring to know you folks are out there!

    Susan

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    Welcome to the forum, duffybear. I am in Olympia, WA, a ways south of you. There are some other Canadians on the forum from BC, and pretty near Vancouver, I think. Perhaps they will see you and respond and you can compare notes and maybe even meet. Joining this forum was a great move, you will find lots of support and friendship on here as well as learning about GPA and the many ways it can affect people, and how we all deal with it. I hope to hear more from you soon!
    Anne, dx'ed April 2011

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    Hey! I'm just across the water in Victoria and have met a few others on here from BC. Welcome to the club - I'm still fairly new with everything but have picked up a ton of info/support from others here :-)

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    Thanks for the hello, Christina!

    A little whine....I was a bit premature in my initial posting, saying that I could walk, btw. I now have a limp - my left foot (along with about 12 other joints) was bugging me before prednisone, and now seems to be back. Annoying, as I have to walk a dog 4 times a day! (I live alone, in an apartment, so I can't just put the dog out in a backyard. My daughter is in town, but she can't come running home every time I need to walk the dog. She'll be here over the next couple of days, with Christmas and all, but then I'm back to hobbling around the neighbourhood.) Oh well, this is life! :-P I'm still happy that at least I don't have to go to work anymore!

  9. #9
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    Walking the dog may be good for you. Getting a little exercise should ultimately pay some sort of dividend...
    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

  10. #10
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    Welcome to our forum. I was diagnosed at 58 and like you feel I was lucky to have so many good years before this condition hit me. There are many people here in there 20,s and 30's. It took a long time for the doctors to realize that I wasn't a hypochondriac and there really was something wrong with me. I was very sick for a while but have been in full remission for almost 5 years now. I still work, at 64 mostly because I enjoy my job. GPA is not the end of the world, it is manageable for most of us so keep positive. I'm just down the road from you in New Westminster. I spent a lot of time at VGH, If you need to be in the hospital that is the one to be in, in metro Vancouver. Go there first

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