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Wegeners granulamatosis diagnosed 6TH OCT 2007 AGE 38

Posted , 3 users are following.

DAVID_K
DAVID_K

HI I WAS DIAGNOSED WITH WEGENERS JUST OVER 3 YEARS AGO AT THE AGE OF 38, I HAVE HAD ALL THE SYMPTOMS THAT GO WITH THIS DISEASE AND USE THE SAME MEDICATION AS A LOT OF OTHER PEOPLE I HAVE BEEN IN REMMISSION FOR 2 YEARS BUT SOME OF THE SYMPTOMS STILL REMAIN,I HAVE PAIN IN ALL OF MY JOINTS AND GET VERY TIRED VERY QUICKLEY.CAN ANYBODY TELL ME IF THEY HAVE HAD THE SAME PROBLEMS AFTER HAVING THE DISEASE FOR THIS LONG AND WHAT YOU DID TO RESOLVE THEM AS MY DOCTORS/SPECIALIST DONT SEEM TO KNOW WHY THIS IS HAPPENING

THANKS

0 likes, 3 replies

3 Replies

  • Debbie_Ley
    Debbie_Ley

    Posted

    Hi David,

    I have had WG for 2 years now and I went into remmission quickly. I have been lucky that I don't have fatigue or joint pain at all. From time to time I have nasal crusting which irritates me no end. I find when I'm cycling alot this clears it easier. I get a little bleeding in the nose too. I seem to be left with a slight shake in my hands.

    I have just on Thursday had an MRI brain scan as my Dr is carrying out an interesting study comparing people with and without fatigue. It appears to have been checking the blood flow when carrying out arithmetic sequences whilst in the tunnel. I think he is trying to create a program to help patients in the aftermath of their diagnosis. Do you take regular exercise or does your fatigue stop you?

    I have found last summer the more I cycled (up to 60 miles per week) the more energy I had and I lost 2 stone. Bought some new clothes and felt better about everything. Swimming helped alot too has it relaxed me and I always got a good night sleep! Take care Debbie

  • DAVID_K
    DAVID_K

    Posted

    HI DEBBIE

    THANKS FOR THE REPLY I HAVE TRYED TO SWIM AND CYCLE BUT I SEEM TO HIT A WALL AND NOT GET ANY STRONGER BUT I AM PESEVERING WITH THEM, BUT IT SEEMS THE MORE I DO THE MORE PAIN I GET AND THE MORE TIRED I BECOME. I SLEEP WELL BUT WHEN I WAKE I FEEL LIKE I HAVE NOT HAD ANY SLEEP AT ALL, THIS CAN BE HARD AS I WORK FULL TIME.IT SOUNDS LIKE YOU HAVE A GOOD DR AND I HOPE YOUR SCAN WENT WELL AND YOU GET THE SHAKES IN YOUR HANDS SORTED OUT.

    THANKS AGAIN FOR THE REPLY

    DAVID[/b]

  • jill_stone
    jill_stone

    Posted

    hi david i have had wg for almost 3 years now, i had chemo in 2009 and went into remmision in 2010, but i have never been clear of all symptoms although they are not as bad as they were , i have the crusting but use a nasal wash which helps and my hearing sometimes is not so good although my hubbie thinks that i have selective hearing, i get chest infections quiet bad and at times could sleep for england, and then i have my good days where i am full of life and thank god for the doctors that have helped me reach my 50th in a couple of weeks time im on 5mg prednisolone and 150 mg of azithiaprine since starting my treatment i have had one bad spell in jan this year but now i know what i am dealing with a hospital stay of 4 days got me back on track and i would say to anyone starting to feel ill go to a&e as soon as things dont feel right, there is still a good quality of life for us wg sufferes as long as you know if you feel unwell go to the doctors as soon as you can i was ill 3 weeks ago this week i did full steam ahead into spring cleaning take care jill
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