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JCV, PML, CSF, ABC, LMNOP...
So I had my semi annual state of the state meeting with my MS doc today. By and large I continue to be the healthiest sick person I know :-) Last week I had a blood draw for JCV test, a brain MRI and an LP. I am a Tysabri user so we need to keep an eye out for PML.
The blood test came back positive for JCV. The MRI shows no change from the last study, done last July. The LP results are not in yet.
My dco says that a postive serum test for JCV is not, in and of itself, a big concern for Tysabri users. More important is whether or not there are JCV antibidies present in the CSF. This indcates that there is current JCV activity. So if the CSF comes pack positive we have to talk about switching off of Tysabri. If the CSF comes back negative I'm OK for a while. We talked about what happens when I hit 24 infusions. He indicated that at that point, regardless of JCV status, We should talk about switching from Tysabri.
He told me I was a good candidate for BG-12 (ruling from FDA expected 3/28/2013). BG-12 is not as aggressive a DMD as Tysabri. Because my MS is "under control" BG-12 should be well able to keep it so. If my MS was not quite as quiet, BG-12 would not like help me. BG-12 has a much more favorable side effects profile than Tysabri with no risk of PML.
Even if my CSF comes back positive we have a reasonably wide window through which to chart our new course. I will have the results either this Sunday, my next Tysabri infusion, or shortly there after. Assuming a positive result, I would still make it through my March, if not my April, infusions. By then I'm hoping we have a favorable BG-12 ruling from the FDA.
Even if the CSF comes back negative, I sure wouldn't mind switching to an oral DMD :-)
Kyle
The blood test came back positive for JCV. The MRI shows no change from the last study, done last July. The LP results are not in yet.
My dco says that a postive serum test for JCV is not, in and of itself, a big concern for Tysabri users. More important is whether or not there are JCV antibidies present in the CSF. This indcates that there is current JCV activity. So if the CSF comes pack positive we have to talk about switching off of Tysabri. If the CSF comes back negative I'm OK for a while. We talked about what happens when I hit 24 infusions. He indicated that at that point, regardless of JCV status, We should talk about switching from Tysabri.
He told me I was a good candidate for BG-12 (ruling from FDA expected 3/28/2013). BG-12 is not as aggressive a DMD as Tysabri. Because my MS is "under control" BG-12 should be well able to keep it so. If my MS was not quite as quiet, BG-12 would not like help me. BG-12 has a much more favorable side effects profile than Tysabri with no risk of PML.
Even if my CSF comes back positive we have a reasonably wide window through which to chart our new course. I will have the results either this Sunday, my next Tysabri infusion, or shortly there after. Assuming a positive result, I would still make it through my March, if not my April, infusions. By then I'm hoping we have a favorable BG-12 ruling from the FDA.
Even if the CSF comes back negative, I sure wouldn't mind switching to an oral DMD :-)
Kyle
Congrats on the negative CSF despite the postive serum!!!! Good to know that there is another safety check in place for us Tysabri users!
Thank you for sharing yor story and results with us!
Best,
Ren
Thank you for sharing yor story and results with us!
Best,
Ren
Great news Kyle!
I'm going to ask my neuro, despite hating lp's, about the serum in lp and pml
I live my Tysabri but I'm still having minor relapses on it
I'm going to ask my neuro, despite hating lp's, about the serum in lp and pml
I live my Tysabri but I'm still having minor relapses on it
All good news re: LP Results! what ever he was looking for in my CSF, to out me at higher risk of getting PML, he didn't find. I'm cleared to continue my Tysabri!
Kyle
Kyle
Sounds like mostly good news for you Kyle! I'm glad for you.
I take Aubagio and after mild side effects the first month, it's been great! I had been reading about BG-12 and from the reading, it sounds like a great choice! When I asked my dr.,he didn't seem to be impressed. Not sure why.
Keep us posted!
Colin
I take Aubagio and after mild side effects the first month, it's been great! I had been reading about BG-12 and from the reading, it sounds like a great choice! When I asked my dr.,he didn't seem to be impressed. Not sure why.
Keep us posted!
Colin
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