i have been having a rough time lately. I just recently got weened off of Presidone. Now everything is falling apart again. Rhuemy is wanting me to go back on Presidone as they know it works. But I hate the stuff it is horrible. Dr. Did put me on CellCept but would like me to take presidone again as well but is leaving the steroid decision up to me. He said if I get desperate enough I will take it again.
Has anyone on here taken CellCept before and if so how well did it work. I started on this yesterday and am wondering what to expect. The pamplet for it reads like a horror story. But It can't be much worse than the Cytoxin. Can it?
I have currenlty lost most of my muscle strength and do not know what to do. My husband is losing his mind. Friday was my birthday. Worst Birthday ever. Spent the whole day in bed sick hardly able to walk. My husband says he has had enough of me being sick and may leave me. I told him that would be a totally dick move on his part. As I am the bread winner and supports him as he is a seasonal worker. I told him I need a support system not stress and if he wants to leave then leave.
Sorry to hear about your husband I am very lucky myself to have a husband who is totally supportive. My sister has a husband who is not supportive about her lupus. He is making her symptoms worse. I wish you the best and will pray for you. I take CellCept. It helps keep the white blood cell count down and therefore keeps the lupus in better control.
Hi Sanrien. My dr also wants to start me on cellcept on my next visit. He’s tried me on plaquenil and then aralen and neither is working as they should.the pred works but that’s a double edged sword as we all know. I’m really sorry to hear about your hubby. That really sucks. If you read my posts I’m dealing with mounds of stress also which totally does not help our situations. Maybe he should come with you to your next dr appt. I dragged my husband to one of mine. He had to hear it right from the dr that yes there is something going on and inflammation throughout my body. Yea…ya think? As hard as it is just do you…take care of yourself…if you don’t no one else will! Keep us updated please.