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New Rituximab ME/CFS open-label phase II study with rituximab maintenance treatment

deleder2k

Senior Member
Messages
1,129
@deleder2k can you say more about this? Any theory that Fluge and Mella can say why it happens?

Not much.. Mella said at his presentation at Invest In ME that one patient responded the day after cyclo, and two others within 4 weeks (if I am not mistaken). I do not know why cyclo works, and why it works so fast. It has effect on the B-cells like Rituximab, but there is also a lot of other stuff going on that happens immediately when giving cyclo.

Perhaps you could care to comment elaborate why cyclo works, and why it works so quick in PWME?, @Jonathan Edwards? No one knows for sure, but I trust you have a pretty good idea!
 
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Messages
2,087
OK thanks, do you know where it is discussed ? (She sounded like she knew but i was surprised, because as you said nobody has identified who the RTX responders are yet )
 

Jonathan Edwards

"Gibberish"
Messages
5,256
Not much.. Mella said at his presentation at Invest In ME that one patient responded the day after cycle, and two others within 4 weeks (if I am not mistaken). I do not know why cyclo works, and why it works so fast. It has effect on the B-cells like Rituximab, but there is also a lot of other stuff going on that happens immediately when giving cyclo.

Perhaps you could care to comment elaborate why cyclo works, and why it works so quick in PWME?, @Jonathan Edwards? No one knows for sure, but I trust you have a pretty good idea!

Cyclo hits so many things that I think it is hard to know how it might work.
 

Kati

Patient in training
Messages
5,497
I agree, Deleder2k was hoping I would have a theory, but I don't!:meh:
Here is my theory. It is all a matter of reservoir.

Rituxan depletes the B-cell reservoir. Whatever ails responders primarily 'hides' in B-cell reservoir. Non-responders have a disease which affects more than B-cells.
Cyclo lyses fast reproducing cells, including blood cells, which includes white cells.
What exactly it is, I don't know, but it should provide a lead (we have discussed this before and you didn't quite agree or subscribe. It's probably over symplistic, but personally I feel this deserves to be explored. At the very least offered to Rituximab non responders.
 

deleder2k

Senior Member
Messages
1,129
I agree, Deleder2k was hoping I would have a theory, but I don't!:meh:

You always have a theory! I'm guessing you have one now as well:thumbsup:

I wonder if RTX and cyclo would be something together.


My treatment schedule (in my experimental fantasy world): plasmapheresis followed by 1g IV prednisolone, then Cyclo+RTX, and some mycophenolate mofetil to hinder b-cells growing.
 
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beaker

ME/cfs 1986
Messages
773
Location
USA
Cyclo hits so many things that I think it is hard to know how it might work.

You always have a theory! I'm guessing you have one now as well:thumbsup:

I wonder if RTX and cyclo would be something together.


My treatment schedule (in my experimental fantasy world): plasmapheresis followed by 1g IV prednisolone, then Cyclo+RTX, and some mycophenolate mofetil to keep b-cells from growing.

Couple Random thoughts/ puzzle pieces :

Rituxan and cytoxin together are basically treatment for CLL . So if it works for that and us, wondering how that could be interpreted. Could this be some form of leukemia ? Or somehow related? Or what do they have in common ?

Also w/ cytoxin targeting fast growing cells and therefore hitting the gut pretty hard. Wondering how that fits in w/ the whole microbiome thing.
 

Jonathan Edwards

"Gibberish"
Messages
5,256
Couple Random thoughts/ puzzle pieces :

Rituxan and cytoxin together are basically treatment for CLL . So if it works for that and us, wondering how that could be interpreted. Could this be some form of leukemia ? Or somehow related? Or what do they have in common ?

Also w/ cytoxin targeting fast growing cells and therefore hitting the gut pretty hard. Wondering how that fits in w/ the whole microbiome thing.

CLL is a disease of B cells, and both rituximab and cyclophosphamide hit B cells. I don't think there is any suggestion it has anything to do with malignancy.

I doubt there is any link to microbiome. If cyclophosphamide kills some dividing gut cells then they will be replaced within a week or two. Nothing in the system would be 're-set' in the way it could be for B cells.
 

panckage

Senior Member
Messages
777
Location
Vancouver, BC
Here it is:
The woman is definitely type A. She cuts off the men in the video almost every chance she gets. I like how she says CFS patients usually die from suicide and then laughs about it LOL

Not that I understand much from this video but its kind of hard to take it seriously as she seems to indicate that she figured out CFS from the moment she saw her first patient
 
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Jonathan Edwards

"Gibberish"
Messages
5,256
The woman is definitely type A. She cuts off the men in the video almost every chance she gets. I like how she says CFS patients usually die from suicide and then laughs about it LOL

Not that I understand much from this video but its kind of hard to take it seriously as she seems to indicate that she figured out CFS from the moment she saw her first patient

A perspicacious comment, I think!