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Thread: Glad to be diagnosed

  1. #91
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    Default Re: Glad to be diagnosed

    @Geoff

    Hey Stranger!! Glad to hear all is well with you!!
    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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  3. #92
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    Default Re: Glad to be diagnosed

    Great to see you on here again, Geoff! And to hear that you are doing so well. Especially interested in your adrenal glands! Though not sure why you can't get off pred if they are working. I recently put myself on a fast taper from 7.5 to 5mg and haven't felt a thing. I would like to get that test for adrenal function, out of curiosity. Have appt. with rheumy in mid October, and will bring up the subject. Wishing you continuing good health and happy times with family.

    Sent from my MotoE2(4G-LTE) using Tapatalk
    Anne, dx'ed April 2011

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  5. #93
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    Default Re: Glad to be diagnosed

    so nice to see you here, Geoff, I've missed you. Thank God you are doing well. I am also on the pred almost 11 years, celebrating my wg anniversary in 10 days from today.
    How much rtx do you get (2000mg, 1000mg, 500mg ?) And how often ? Are you on maintenance meds too ?
    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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  7. #94
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    Default Re: Glad to be diagnosed

    Like ships in the night Sam!!..great to speak with you the other day, hope all is going well.
    I'm in Clinic 12 on the 15th..hope the Prof is up to speed and hopefully ironed his shirt!!

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  9. #95
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    Default Re: Glad to be diagnosed

    Hi Pete!..no wonder you look so well with those 3 scallywags to give you the run around! Having grandchildren is like working out in the gym every day!

    Hello Anne, yes getting your adrenal glands tested is a reassuring thing; good luck for later this month!..the dark green spoon rest is still in pride of place in our kitchen!

    Thank you for the kind words Alysia, I don't have the answers to your questions but could inquire later this month when I am back at Addenbrookes...only maintenance meds is 5mg of pred!..I hope all is well with you my dear friend.

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  11. #96
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    Default Re: Glad to be diagnosed

    Wonderful to hear from you Geoff.
    So glad that everything is going so well.

    If ever you get back to Oz, let us know, we will be in for a catch up

    I have missed your taunting over the cricket

    Don't be a stranger, you hear
    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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  13. #97
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    Default Re: Glad to be diagnosed

    Some things never change..and I admit to feeling a bit sentimental when I read these messages from dear friends, some of whom I've been very fortunate to meet, as we travel through life together on this crazy path!
    This illness has given me a wonderful opportunity to reach out across the world and make lasting friendships.
    I love and miss you all..xx

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  15. #98
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    Default Re: Glad to be diagnosed

    Hi Geoff,

    Iím glad you got a diagnosis. I tried Mycophenylate but it never worked for me. When I was first diagnosed I was placed on Methotrexate and prednisone (of course). After several years the methotrexate stopped working and I was placed on Imuran. After several years that stopped working & was placed on Mycophenylate. I was on that for a year with no relief. Iíve been on Rituxin for a few years now on and off with prednisone. I find that I have a definite love hate relationship with prednisone. My body loves it till I try & come off... then I become a very scary human . & everyone evades me. Sometimes I go on it and donít gain any weight and sometimes I will gain 30 lbs in 8 weeks! Every time it seems different-but always decreasing the dose... well itís no fun. Iím pleased that your symptoms are more controlled.
    Btw-I love this group. The people here are wonderful. Which Iím sure you have noticed.
    Natty


    Sent from my iPhone using Tapatalk

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  17. #99
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    Default Re: Glad to be diagnosed

    Oops sorry! Should have read the whole thread.


    Sent from my iPhone using Tapatalk

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  19. #100
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    Default Re: Glad to be diagnosed

    Hi Geoff,
    Good to see you on the forum. How often are you at Addenbrookes now?
    I seemed to be there most months for the first couple of years, but since my transplant it looks like I'll only be going twice a year. Most of my blood tests and some drugs for my transplant are very similar or even the same as for Vasculitis, so it makes sense that Adds don't make me more frequent appointments (especially considering it's much further away than my transplant clinic in Leeds)
    I do hope our Adds appointments collide at some point. Would be good to see you again.
    Diagnosed April 1995

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