annoying!

carolew · Post by **carolew** » Wed Jan 21, 2009 3:37 pm

Well, they did it. They told me to stop my FTY70 even if my lymphocytes were at .3. They did not want such a drastic decrease in my lymphocytes... now they are afraid of complications.
I am getting nervous too because I know that there are nasty unforeseen complications with many study drugs.. I don't want my brain to rot...!!!
I will restart it she says when my count is up to .6. If it drop again, I will not be able to continue on the drug. I KNOW that I have been much lower for 2 years....was this a time bomb just waiting to explode. I am fine now...
later, Carole

dignan · Post by **dignan** » Wed Jan 21, 2009 6:23 pm

Sorry to hear that Carole. I hope you get back up to .6 quickly and don't have any more problems. If you do go too low a second time, I wonder if they'd consider letting you take the lower 0.5 dose (outside the trial) if it's revealed that you're on the higher 1.25 dose in the extension phase.

carolew · Post by **carolew** » Thu Jan 22, 2009 10:12 am

Hello Dignan,
I could do even worse and watch my counts myself and take one dose out of 2... but I won't play the devil and I will be a good patient... To think that I waited so long to get this drug and now, it seems to work TOO well on me... well

I don't think that they can play with the dosage themselves since this is still a study drug, not out on the market...
I don't push it cause I think there is a good reason for not leaving lymphocytes too low... I have heard of diseases, terrible diseases that can occur when the immune system is not perfect.
I will continue with my dear Lipitor and hope for the best.,, exercise daily and life goes on... later, Carole