Finally getting off cytoxan ! and lowering preds

[Jack]

I started on 2000 and dropped to 1000 after a year or so of no problems.

[DEE]

just checked diary and meds box defenately 500mg twice a day have wrote in diary at time of appointment to raise to 2000mg at next review in three weeks
Elephant why did you mention about been tired
seeing gp on tues morning will ask him about doseage DEE x

[elephant]

I was thinking if you were more tired it could be a sign your wegs could be acting up. But with all that has been going on with you in the last 6 months, being tired could mean many things. Dee can you leave a message with your Rhuemy (weg specialist) nurse about the dosage. Ask why he started out with 1000 mg instead of 2000.

[DEE]

checked notes again says 1000mg to rise to 2000mg would be taking for two years or lifetime depending if not working could use Imuran
rhuemy said off cxt for two weeks before cellcept started wg wanted to start and build up
cant contact until tues as public holiday mon seeing gp 8.30 tues morn if he cant help will ring wg straight away tues !!

[elephant]

Ok, Dee. Sounds good. Rest good today.

[Sangye]

I just don't like the sound of this. They wouldn't take you off ctx for so long because they couldn't get the Wegs under control. And that was with ctx! And now: no ctx for 2 weeks and then 1/2 the usual dose for Cellcept. And even that takes 4 weeks to fully start working.....

They kept you on a highly toxic drug for so long and are now pussy-footing around with a much less toxic one! I'm glad you're going to ask for a thorough explanation, Dee. It just doesn't make sense and sounds like a recipe for waking up a Wegs dog that has barely fallen asleep.

[DEE]

beginning to doubt myself now !!! he gave prescription for cellcept and told me to take that night
said we had to stop cxt because been on so long and was leaving preds the same
would i be right in thinking that you would only take cellcept on its own that i definatetly should have stopped cxt
just asked my son who was with me he took it that i had to stop cxt any more advice

[Sangye]

It depends on your WBCs. If the ctx had lowered them too much, they might have to let them recover a bit before the Cellcept lowers some of them (the B cells).

I don't think they ever use ctx and Cellcept simultaneously. I remember when Dr Seo switched me from Cellcept to ctx I asked if we'd lower the Cellcept gradually because ctx doesn't kick in for 4 wks. He was like "No, no! Don't take another Cellcept pill." It was dicey because my lungs were bleeding and it would be 4 wks without good drug cover. But I knew it was dicey--he thoroughly explained the reason for the risk. There was no alternative.

[DEE]

WBC 6.0 last week ,it was the serm gamma glutamyl transfere level he said we had to watch normal range 9-36 mines been as high as 166 but at 129.0 just now thus having fasting bloods as soon as i casn arrange at gp which will be tues am creatinne level at 91.0 and ALT/SGPT 49.0 R B C 3.21 if that makes sense

[Sangye]

Your WBCs are great-- no problem there. GGT is a liver enzyme. Cellcept does not cause liver problems like imuran or mtx might. So that wouldn't be the reason for the delay in starting Cellcept at full strength.