Guest guest Posted June 29, 2005 Report Share Posted June 29, 2005 Rose: When I saw Dr Baughman he suggested adding in one of several other drugs to my CellCept and Plaquanil regiment until I begin the Cytoxen in Kuwait. By the way, I have also argued my way to get them to increase the CellCept beyond the standard dosage of 1gram. Because they do use higher doses for transplant patients and I thought maybe a higher dose would work, worth a try right? I do feel at this point that perhaps there is some improvement..... I will find my letter from him that speaks of the other drugs he suggested, becuase after all the pushing from my side and insisting I am waiting on the cytoxen and my refusal of remicade, you see there come out some other suggestions to try. and what he did say is that with cellcept and imuran at the end of their therapy transplant patients will not be on these drugs alone they will be on a combination of drugs to supress the immune system. so with pushing my neuro researched the fda guidelines for cellcept and found that she was allowed to go beyond 1 gram of cellcept for me. and we are trying a new cocktail so to speak of drugs that might even include adding methotrexate back into this mix of cellcept, plaquanil, one of these three new drugs we will decide on tomorrow. if a combo of all these can keep me off cytoxen i will be happy. baughman thinks cytoxen is the only answer for long term control. but you know what, question deeply, it doesnt offer control. it offers permenant cytoxen treatment, lifetime cytoxen treatment. he admits this the same way he does for remicade. now for me, i am deciding to postpone a continuous treatment of biweekly cytoxen treatments for as long as possible. i know i am not doing so hot right now in terms of my scans, but i have a couple months to see if this new regiment will show any improvement. Just a thought here Rose, but I kind of think the Sarc becomes resistant to drugs. Maybe changing drugs would help you, maybe CellCept would work for you. And maybe you could get patient assistant for it. keep your fingers crossed and your prayers flowing, take care, kim ns moderator Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.