Finally getting off cytoxan ! and lowering preds

[DEE]

thanks elephant will post when we get back DEEx

[DEE]

OK HERE GOES
COMING OFF CXT TODAY MOVING ONTO MYCOPHENATE MOFETIL (CELLCEPT) TOMORROW
NO BLOOD IN URINE NOW GOING TO KEEP WATCH ON THAT-SMALL AMOUNT OF PROTEIN FOUND
BLOODS AS EXPECTED JUST NEED TO KEEP WATCH ON LIVER RESULTS
AND HAVE FASTING BLOODS DONE AGAIN
TRYING CELLCEPT AT 1000mg FOR THREE WEEKS GRADUALLY INCREASING TO 2000mg
TESTS FOR USING IMURAN CAME BACK SO CAN USE THAT IF THINGS DONT WORK OUT HE SAID WE NEED TO KEEP CXT FOR EMERGENCY AS AT THE MOMENT WILL LEAD ME INTO MORE SERIOUS SIDE AFFECTS IF I STAY ON ANYLONGER
BUT THEY HAD NO OTHER CHOSE BECAUSE OFF HOW BAD MY CONDITION WAS
SEES NO REASON EYE OR DENTAL PEOPLE SHOULD NOT BE ABLE TO DO WHATS NEED AS LONG AS THE COVER ME ANTI B WISE BEFORE AND AFTER TREATMENT SO NEED TO SEEING GP ON TUES MORNING
DO FINGERS CROSSED GOING TO BED SHORTLY INFORMATION OVER KOAD
PS PREDS STAYING AT 20MG SAID WOULD BE TAPPERING SLOWLY
THANKS FOR ALL YOUR SUPPORT WILL LET YOU KNOW HOW I GET ON BUT HAPPIER IF THAT MAKES SENSE DEE x

[DEE]

PS FORGOT TO SAY WG CONSULT TOLD USE THAT HE INHERITED A PATIENT FROM ANOTHER PART OF UK WHO HAD BEEN ON CXT FOR SEVEN YEARS !!!!!! they had used cxt low dose as maintainence drug!!!!!!!!

[Jack]

Good news DEE and it sounds like a reasonable regimen. Hope you get on well with the Mycophenolate and can perhaps eventually get off that and the Pred too.

Seven years on ctx does not bear thinking about. You would have to start thinking about taking legal action if you were in that position.

[DEE]

thanks Jack ten months on cxt and six on mtx was enough for me and i know preds tappering has to be slow but i will go with that
i ask at pharmacy the best time to take talets and he said atleast twelve hours apart is that what you do ?

[Jack]

To be honest, because I take the slow acting type (Myfortic) I don't keep to a strict time table. Once in the morning and once in the evening is about as accurate as it gets.

[elephant]

Dee glad things went well for you. I take cellcept morning and night about 12 hours apart. I am on 2000 mg of cellcept. That is awful to hear about the guy on cytoxan for 7 years.

[Sangye]

Dee, I'm SO glad you're getting off ctx. I'm also glad they're not tinkering with the pred until you are established on Cellcept.

Reading about the Weggie on ctx for 7 years actually made me shout out loud. Apologies to my dogs and bird.... The doctor(s) who did that should be sued. Anyone doing a cursory search of ctx and Wegs on the internet can see that is outrageous. That poor person. I wonder if they even know...

[elephant]

My guess they did not know. I would not know if I was not informed by my doctor and this forum. My local Rhuemy told me all the complications being on cytoxan...plus having a kidney transplant for 21 years and all the immunusuppressant meds I have been on just add up to be a bad deal.

[Sangye]

Even my lousy first rheumy explained it all to me.... Man, I feel so bad for this person.