Thank you very much for your answers!
As regards the lab tests, the system here usually is:
You can get them done anywhere in France, and fax or mail them to your hospital, where a doctor looks at them and calls you if anything's wrong.
When I was just on Methotrexate, this was the system: lab every 2 months, results faxed to doctor; I saw the doctor herself only every 6 months.
On Metho + infliximab, saw a doctor (a different one each time, at the public hospital) and had lab tests done every 2 months.
Dear Debbie Lou,
Yes, Mabthera = Rituximab.
Infliximab is another drug I've had before; it's also called Remicade.
I had my first two infusions of Rituximab this month (July), because Remicade had stopped working for me. Apparently that tends to happen after a few years. I decided not to be in the Protocol group after all, because I could get the drug without being in the protocol group, and in the end I managed to find out that there was a big difference in the number of visits to the hospital, if you're in the protocol group or not.
The aim of this research is to see if two infusions of Mabthera 15 days apart are necessary in treatment sessions after the first two infusions, or if just one infusion would be sufficient each time (after the first six months). So everybody in the resaerch group gets two infusions first; then, six months later, half of them get one infusion and the other half, two. But Roche laboratories make you come in very regularly for check-ups for 2 years. I didn't want that, I was looking for as free a lifestyle as possible with this disease, and I had told the doctor that. But he withheld info from me as to the difference between being in this group or not. He was very angry when I told him that in the end I wouldn't be in the group; he said I'd wasted his time during the initial screening, etc. So I replied that I'd put my questions to him very clearly from the start, that his answers hadn't been clear to me (in fact to put it bluntly I believe he lied), and that the screening and other procedures had taken up my time, too. And do you know what he replied? He said: "Mais vous, vous êtes une malade" = "But you're a sick person," - as if it were only doctors' time that was valuable.
How did I find out that I'd really only have to see a doctor every 6 months or so? - I wrote an e-mail to Professor Berenbaum, the head of the rhumatology section, who I'd been lucky enough to meet a few times. He answered my questions very courteously.
So now I'm nearly ready for my trip, and hoping the Mabthera will be efficient!
'Bye for now,
Post Edited (Kangaroo) : 7/29/2008 7:45:55 AM (GMT-6)