Using a Sledgehammer to Crack a Nut

[Jonathan Edwards]

In theory then, assuming that the patient could tolerate it, would plasmapheresis and RTX together be the best combination to get the mature B cells in the plasma and the already existing auto-antibodies? I know this is probably not realistic, but just curious if I am grasping the concept.



Is JC virus the "Jakob Creutzfeldt" virus in the US or something else? It seems that this virus (JC or Jakob Creutzfeldt) is a risk with IVIG and it sounds like it is a potential risk with RTX, too?

Sort of, for the first question, but there are technical issues about how to combine them.

JC virus causes progressive multifocal leucoencephalopathy, and is not the same as the prion of Jacob Creutzfeldt disease which is a spongiform encephalopathy. The risk with IVIG would be the latter although I think it is now screened out. Both are disasters and fortunately very very rare.

 

[Gingergrrl]

Sort of, for the first question, but there are technical issues about how to combine them.

If someone were to combine them, would they have PP first and then RTX? Am just curious about the order although the chances of me having them both are close to zero.

JC virus causes progressive multifocal leucoencephalopathy, and is not the same as the prion of Jacob Creutzfeldt disease which is a spongiform encephalopathy. The risk with IVIG would be the latter although I think it is now screened out. Both are disasters and fortunately very very rare.

So JC virus is different than the Jacob Creutzfeldt virus (often called JC in the US which is what confused me) and the first is related to RTX and the second is potentially related to IVIG? I know they screen the blood supply but when I read about RTX, (oops meant to say IVIG) in addition to anaphylaxis, blood clots and pulmonary edema it also lists the Jakob Creuztfeldt virus as a rare side effect.

At this point, none of that is enough to stop me from trying if my new Neuro and Pulmonologist feel any of these options can help me to reduce the auto-antibodies and breathe better.

Am curious though when they say "rare" how rare these things really are? When I had a neurotoxic reaction to Levaquin that damaged my tendon, I was told (in 2010) that this was exceptionally rare and later learned that it was quite common so the word "rare" has less meaning to me now.

Does anyone know how rare all of these things really are?

 

[lansbergen]

Does anyone know how rare all of these things really are?

Diagnosed terminal human TSE disease is very rare. Little is known about what happens before that.

 

[Jonathan Edwards]

If someone were to combine them, would they have PP first and then RTX? Am just curious about the order although the chances of me having them both are close to zero.



So JC virus is different than the Jacob Creutzfeldt virus (often called JC in the US which is what confused me) and the first is related to RTX and the second is potentially related to IVIG? I know they screen the blood supply but when I read about RTX, (oops meant to say IVIG) in addition to anaphylaxis, blood clots and pulmonary edema it also lists the Jakob Creuztfeldt virus as a rare side effect.

At this point, none of that is enough to stop me from trying if my new Neuro and Pulmonologist feel any of these options can help me to reduce the auto-antibodies and breathe better.

Am curious though when they say "rare" how rare these things really are? When I had a neurotoxic reaction to Levaquin that damaged my tendon, I was told (in 2010) that this was exceptionally rare and later learned that it was quite common so the word "rare" has less meaning to me now.

Does anyone know how rare all of these things really are?

I think the chances of getting Jacob Creutzfeldt are virtually zero now that screening is in place. The risk with rituximab is dependent on other predisposing factors but for patients with autoimmunity as a whole the risk of activation of JC virus must be less than 1 in 10,000 I think, and I am pretty sure quite a bit less. Unlike levaquin the incidence is not a matter of debate here because encephalopathy does not get missed.

 

[Gingergrrl]

I think the chances of getting Jacob Creutzfeldt are virtually zero now that screening is in place. The risk with rituximab is dependent on other predisposing factors but for patients with autoimmunity as a whole the risk of activation of JC virus must be less than 1 in 10,000 I think, and I am pretty sure quite a bit less. Unlike levaquin the incidence is not a matter of debate here because encephalopathy does not get missed.

Thank you and I figured it would truly be rare with the screening in place (for IVIG.) I was only using Levaquin as a comparison b/c I had been told it was "rare" to the point of unheard of what happened to me and I have since met hundreds of people who suffered FQ injuries so I can no longer really assess the word "rare" objectively.

Am still curious, if the answer is not too complex, if someone were to have Plasmapheresis and RTX, I assume that would be the order (PP and then RTX) or is that incorrect?

 

[Jonathan Edwards]

Thank you and I figured it would truly be rare with the screening in place (for IVIG.) I was only using Levaquin as a comparison b/c I had been told it was "rare" to the point of unheard of what happened to me and I have since met hundreds of people who suffered FQ injuries so I can no longer really assess the word "rare" objectively.

Am still curious, if the answer is not too complex, if someone were to have Plasmapheresis and RTX, I assume that would be the order (PP and then RTX) or is that incorrect?

Probably, but it may be too complicated to be definitive about it.

 

[Gingergrrl]

Probably, but it may be too complicated to be definitive about it.

Okay, thank you and was just curious.