User Tag List

Likes Likes:  0
Page 1 of 20 12311 ... LastLast
Results 1 to 10 of 200

Thread: Finally getting off cytoxan ! and lowering preds

  1. #1
    Join Date
    Feb 2010
    Posts
    1,319
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default Finally getting off cytoxan ! and lowering preds

    WELL , WENT TO SEE RHUEMY MONDAY TALKED ABOUT STOPPING CXT AND LOWERING PREDS
    HE WAS GOING TO SUGGEST MYCOPHENOLATE- CELLCEPT OR LEFLUNOMIDE -ARAVA
    OR MAYBE AS WG CONSULT SUGGESTED AZATHIOPRINE-IMURAN
    SEEING WG CONSULT THURS PM
    HE GAVE ME SOME LEAFLETS TO READ JUST WHAT U NEED WHEN U NEED CASTARACT SORTING OUT AND BRAIN WENT INTO DUMMY MODE DID NOT ASK ANY QUESTION EG HOW DO YOU TAKE THESE DRUGS FOR WHAT THE PROTOCAL FOR COMING OFF CXT !!!
    BUT BEFORE YOU SCOLD ME FOR NOT ASKING THE QUESTIONS WHICH I SHOULD KNOW BETTER TO DO
    THE IDEA OF APPOINTMENT WAS TO PREPARE ME FOR WG CONSULT APPOINTMENT WHICH I HAVE ALREADY MADE A LIST OF QUESTIONS AGES AGO
    I THINK THE IDEA OF CHANGE IS ALITTLE SCARY MAYBE THATS WHY PREDS HEAD KICKED IN
    ANY ADVICE WILL BE WELCOME AS SEEM TO BE AFFECTED BY BRAIN FOG AT THE MOMENT
    DEEx

  2. #2
    Join Date
    Feb 2010
    Posts
    1,319
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Told you i had brain fog meant how long do you take new drugs for

  3. #3
    Join Date
    Apr 2009
    Location
    South Carolina
    Posts
    4,273
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    When the switch you to a drug like imuran, I was told they usually put you on that for two years and try to get you off all WG medicines. Of course in those two years they are still checking you out for any kind of WG flares. Sounds like you are prepared to see the WG specialist. You will do fine.

  4. #4
    Join Date
    Feb 2010
    Posts
    1,319
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Thanks Elephant head abit clearer now think abit of fear of the unkown
    even though i know it will be for the best in the long run and also give me more chance of getting other issues sorted DEEx

  5. #5
    Join Date
    Nov 2008
    Location
    Maryland, USA
    Posts
    10,836
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Dee, that's great news. It's better to ask your Wegs doc all those questions anyway.

    I understand the fear of the unknown thing. When they put you on a drug you're afraid it'll kill you, and when they take you off it you're afraid the Wegs will kill you! And just not knowing the side effects, etc.... It's the "devil you know versus the devil you don't" thing.

  6. #6
    Join Date
    Jan 2010
    Location
    Yuma, Arizona 85364
    Posts
    952
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Quote Originally Posted by DEE View Post
    BUT BEFORE YOU SCOLD ME FOR NOT ASKING THE QUESTIONS WHICH I SHOULD KNOW BETTER TO DO
    THE IDEA OF APPOINTMENT WAS TO PREPARE ME FOR WG CONSULT APPOINTMENT WHICH I HAVE ALREADY MADE A LIST OF QUESTIONS AGES AGO
    I THINK THE IDEA OF CHANGE IS ALITTLE SCARY MAYBE THATS WHY PREDS HEAD KICKED IN
    ANY ADVICE WILL BE WELCOME AS SEEM TO BE AFFECTED BY BRAIN FOG AT THE MOMENT
    DEEx
    Dee, Stop beating yourself up You had the right questions ready for the right doctor, if you would have remembered to ask the doc you saw yesterday these questions it might have muddied the water so to speak. This way you ask the questions to the expert and you will have his/her answers to remember

  7. #7
    Join Date
    Feb 2010
    Posts
    1,319
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    THANKS GUYS its now 24 hrs after appoinment fog clearing abit , just had two visitors they say the same asyou .
    They can see were the fear of the unknown comes into play as they have supported me from the beginning like you guys
    ive come so far after a rough six months just feeling my feet slightly so to speak
    i just dont want to rock the boat and wake that dog up !!!
    fingers crossed for thursday that the cultures come back with the right answers
    taking my own PA with MY SON he never leaves if theres quetions to be will keep you up to date
    DEE x

  8. #8
    Join Date
    Aug 2010
    Location
    UK
    Posts
    163
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Hello Dee, Just wanted to say hi and wish you well for your appointment tomorrow. It's so difficult isn't it when these appointments cause so much apprehension just when you need it least ( me for one) but I am sure
    you'll be fine with your son by your side. Wishing you Good luck !! (from way down the coast !!)

    (just feeling my way round as not used to pc's or forums being of a certain age !!)

  9. #9
    Join Date
    Feb 2010
    Posts
    1,319
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Thanks Fran keeping busy today will let you knoe what happens DEE x

  10. #10
    Join Date
    Apr 2009
    Location
    South Carolina
    Posts
    4,273
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Dee, sleep well tonight. Glad you will be with your son too.

Page 1 of 20 12311 ... LastLast

Bookmarks

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •