Hey there,
I'm sorry to hear about the airlift; that must have been really scary for you...
I've been on both rituxan and cellcept and before rituxan my rheumy talked to me about the cases of rituxan-linked PML. Now the way he put it, I could either let lupus and aps kill me for sure, or take the truly miniscule risk of being the next patient to be one-in-a-million and get PML; he did say the choice was mine and it was a very obvious one for me! As far as the cellcept PML, that's one of my meds now too, the choice is still the same as far as I'm concerned; almost non-existent risk of PML (and it is almost non-existent if one thinks about how many people have taken cellcept worldwide over the ten years it's been on the market and how many of those have gotten PML!!) versus a very real risk of death from lupus and aps...At least that's the way I see it...
I remember my docs mentioning (and the internet articles mention this as well, both the ones on the rituxan pml cases and the cellcept ones) that the few patients that got PML were the ones that had recently been taking or were still taking multiple immunossupressants; and they talk about cytoxan and cyclosporine and rituxan or cellcept on top of those ones. The way my doc had explained it was that there is a limit to immunossupression within each person after which the JC virus may be activated (IF one has it!! Emphasis on that IF as that's not even a certainty!!) and the patient might get PML; and multiple immunossupressants might contribute to pushing one over that limit more than any one immunossupressant can.
The first time I got rituxan I was on monthly high dose cytoxan pulses, almost weekly steroid ones and had just gotten off cellcept too; so multiple immunossupressants there... I did not react positively to rituxan as the second infusion triggered an immune response so large that I had to stay in hospital for ten days just to get past it and that immune response in turn triggered my lupus and aps back into action; and it wasn't cellcept or rituxan, but the diseases themselves that have almost killed me since again and again... Rituxan did its job, in the sense that I don't have b-cells at all and I do feel that the combination of meds I've been on this past year (rituxan and cellcept included) helped a lot in keeping me here until today...! Of course that's just me... :hehe:
Are you taking cellcept throughout the lymphostat-b trials? What does your doc think about the cellcept related PML cases? Lymphostat-b is a very, very new med (as you know!!); but it has very promising results regardless!! :bigsmile: :thumbs: I really, truly hope it helps you loads and that you feel better very soon! Brain involvement is no fun indeed...! :grouphug2: :grhug:
:flowery:
Zoi
I'm sorry to hear about the airlift; that must have been really scary for you...
I've been on both rituxan and cellcept and before rituxan my rheumy talked to me about the cases of rituxan-linked PML. Now the way he put it, I could either let lupus and aps kill me for sure, or take the truly miniscule risk of being the next patient to be one-in-a-million and get PML; he did say the choice was mine and it was a very obvious one for me! As far as the cellcept PML, that's one of my meds now too, the choice is still the same as far as I'm concerned; almost non-existent risk of PML (and it is almost non-existent if one thinks about how many people have taken cellcept worldwide over the ten years it's been on the market and how many of those have gotten PML!!) versus a very real risk of death from lupus and aps...At least that's the way I see it...
I remember my docs mentioning (and the internet articles mention this as well, both the ones on the rituxan pml cases and the cellcept ones) that the few patients that got PML were the ones that had recently been taking or were still taking multiple immunossupressants; and they talk about cytoxan and cyclosporine and rituxan or cellcept on top of those ones. The way my doc had explained it was that there is a limit to immunossupression within each person after which the JC virus may be activated (IF one has it!! Emphasis on that IF as that's not even a certainty!!) and the patient might get PML; and multiple immunossupressants might contribute to pushing one over that limit more than any one immunossupressant can.
The first time I got rituxan I was on monthly high dose cytoxan pulses, almost weekly steroid ones and had just gotten off cellcept too; so multiple immunossupressants there... I did not react positively to rituxan as the second infusion triggered an immune response so large that I had to stay in hospital for ten days just to get past it and that immune response in turn triggered my lupus and aps back into action; and it wasn't cellcept or rituxan, but the diseases themselves that have almost killed me since again and again... Rituxan did its job, in the sense that I don't have b-cells at all and I do feel that the combination of meds I've been on this past year (rituxan and cellcept included) helped a lot in keeping me here until today...! Of course that's just me... :hehe:
Are you taking cellcept throughout the lymphostat-b trials? What does your doc think about the cellcept related PML cases? Lymphostat-b is a very, very new med (as you know!!); but it has very promising results regardless!! :bigsmile: :thumbs: I really, truly hope it helps you loads and that you feel better very soon! Brain involvement is no fun indeed...! :grouphug2: :grhug:
:flowery:
Zoi
