Finally getting off cytoxan ! and lowering preds

[DEE]

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

[DEE]

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

[elephant]

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.

[DEE]

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

[Sangye]

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.

[Lightwarrior]

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

[DEE]

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

[Fran]

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 !!)

[DEE]

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

[elephant]

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