Rituximab (I'm from Holland)

Anoirb

Anoirb

Messages
14
Hi there,

Been 10 years since I've been diagnosed with ME. I'm searching for a place in Europe where they can give me Rituximab. Dr de Meirleir said in may he would treat his patients with rituximab, but yet still no plans from his side after asking nearly a half year. I've also contacted Kolibri Medical insitution several times for a couple of weeks, but also not an answer. Maybe u guys can help me out?

Thanx in advance.
 
Hip

Hip

Senior Member
Messages
18,161
Maybe this thread will be of interest; it's about getting rituximab in hospitals in Shanghai, China, where the cost per 500 mg infusion is £1400.
 
Hip

Hip

Senior Member
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18,161
Anoirb said:
I mean are they familiar by Melle and Fluge method......
Click to expand...

I am not aware of any specific method that Fluge and Mella have of administering rituximab (is there a specific method?); I understand that the most important issue with rituximab administration is the safety aspects and procedures, and some hospitals are better than others in terms of such safety procedures.
 
Anoirb

Anoirb

Messages
14
Hip said:
I am not aware of any specific method that Fluge and Mella have of administering rituximab (is there a specific method?); I understand that the most important issue with rituximab administration is the safety aspects and procedures, and some hospitals are better than others in terms of such safety procedures.
Click to expand...
Not to disrespect, but the whole succes for ME CFS treatment with Rituximab was based on the method (quantity of dose, frequency, interval and so fort) by Fluge and Melle that's why I asked.......
 
Hip

Hip

Senior Member
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18,161
Anoirb said:
but the whole succes for ME CFS treatment with Rituximab was based on the method
Click to expand...

That's the first I have heard of that. The first ME/CFS patient to experience remission from rituximab did so by accident, when they were given the standard rituximab protocol for rheumatoid arthritis.
 
Jonathan Edwards

Jonathan Edwards

"Gibberish"
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5,256
Hip said:
That's the first I have heard of that. The first ME/CFS patient to experience remission from rituximab did so by accident, when they were given the standard rituximab protocol for rheumatoid arthritis.
Click to expand...

Oystein Fluge deliberately used B cell depletion in ME because he had noted improvement in ME in association with treating B cell lymphoma. I have a feeling his first attempt was with methotrexate. I think rituximab was used deliberately thereafter. The protocol he and Olav Mella have used was derived from my protocol for RA but is significantly different in re-dosing schedule. So @Anoirb seems to have got this right.

The real issue about rituximab treatment is not the safety of infusion method, although that is important, it is the long term strategy for maintaining adequate B cell depletion over a chosen period. The Norwegian policy is quite complex and specific. When my protocol for RA was copied by physicians in continental Europe who did not understand the long term strategy major problems occurred with immunoglobulin levels. For the ten years I was routinely giving rituximab in RA monitoring long term strategy for individual cases occupied a significant part of my job. There is nothing straightforward about using the drug. Usage in the autoimmune brain disorders probably needs to follow a different strategy. Each disease behaves differently in terms of rates of relapse and immune reconstitution. I would caution people against having rituximab outside trials anyway and certainly against having rituximab in centres that do not have specific experience with usage in the relevant disorder. At present I am not convinced that anywhere other than Bergen know how to handle the drug in ME.
 
Anoirb

Anoirb

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14
The outcome was an accident, but they had a certain method which they used. Actually it was a woman with long cancer in Norway who was luckily enough to get better or at least improved a lot. Watch this video:
 
Hip

Hip

Senior Member
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18,161
Jonathan Edwards said:
The real issue about rituximab treatment is not the safety of infusion method, although that is important, it is the long term strategy for maintaining adequate B cell depletion over a chosen period. The Norwegian policy is quite complex and specific.
Click to expand...

Thanks for clarifying that, it's always great to hear you expertise in these matters.



Jonathan Edwards said:
I would caution people against having rituximab outside trials anyway and certainly against having rituximab in centres that do not have specific experience with usage in the relevant disorder. At present I am not convinced that anywhere other than Bergen know how to handle the drug in ME.
Click to expand...

I believe Fluge and Mella have also cautioned ME/CFS patients against trying rituximab outside of clinical trials; though I can understand why ME/CFS patients may want to try it anyway.

I would not want to encourage nor discourage individual patients in their considerations about trying rituximab; but if it is the long term strategy for maintaining B cell depletion that is a disease-specific approach, then presumably, the initial infusions of rituximab will be similar to the rheumatoid arthritis protocol. So if an ME/CFS patient just wanted to see if they responded to rituximab by taking say a couple of infusions, would I be right in thinking that the protocol used for these initial infusions is not that important (provided safety procedures are followed).



By the way, @Anoirb, a while ago I went though every thread in the rituximab sub-forum of Phoenix Rising, looking for ME/CFS patients who had tried rituximab, to see what sort of percentage had positive results.

Out of the 14 patients who tried rituximab, only 2 had long term positive results, and 4 had serious side effects.
 
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Anoirb

Anoirb

Messages
14
Hip said:
Thanks for clarifying that, it's always great to hear you expertise in these matters.





I believe Fluge and Mella have also cautioned ME/CFS patients against trying rituximab outside of clinical trials; though I can understand why ME/CFS patients may want to try it anyway.

I would not want to encourage nor discourage individual patients in their considerations about trying rituximab; but if it is the long term strategy for maintaining B cell depletion that is a disease-specific approach, then presumably, the initial infusions of rituximab will be similar to the rheumatoid arthritis protocol. So if an ME/CFS patient just wanted to see if they responded to rituximab by taking say a couple of infusions, would I be right in thinking that the protocol used for these initial infusions is not that important (provided safety procedures are followed).



By the way, @Anoirb, a while ago I went though every thread in the rituximab sub-forum of Phoenix Rising, looking for ME/CFS patients who had tried rituximab, to see what sort of percentage had positive results.

Out of the 14 patients who tried rituximab, only 2 had long term positive results, and 4 had serious side effects.
Click to expand...
Thanx buddy for helping me out. Will read that tomorrow, brain fog for the win now -_-
 
Anoirb

Anoirb

Messages
14
Jonathan Edwards said:
Oystein Fluge deliberately used B cell depletion in ME because he had noted improvement in ME in association with treating B cell lymphoma. I have a feeling his first attempt was with methotrexate. I think rituximab was used deliberately thereafter. The protocol he and Olav Mella have used was derived from my protocol for RA but is significantly different in re-dosing schedule. So @Anoirb seems to have got this right.

The real issue about rituximab treatment is not the safety of infusion method, although that is important, it is the long term strategy for maintaining adequate B cell depletion over a chosen period. The Norwegian policy is quite complex and specific. When my protocol for RA was copied by physicians in continental Europe who did not understand the long term strategy major problems occurred with immunoglobulin levels. For the ten years I was routinely giving rituximab in RA monitoring long term strategy for individual cases occupied a significant part of my job. There is nothing straightforward about using the drug. Usage in the autoimmune brain disorders probably needs to follow a different strategy. Each disease behaves differently in terms of rates of relapse and immune reconstitution. I would caution people against having rituximab outside trials anyway and certainly against having rituximab in centres that do not have specific experience with usage in the relevant disorder. At present I am not convinced that anywhere other than Bergen know how to handle the drug in ME.
Click to expand...
Thanx for sharing your view! Very interesting....
 
Jonathan Edwards

Jonathan Edwards

"Gibberish"
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5,256
Hip said:
I would not want to encourage nor discourage individual patients in their considerations about trying rituximab; but if it is the long term strategy for maintaining B cell depletion that is a disease-specific approach, then presumably, the initial infusions of rituximab will be similar to the rheumatoid arthritis protocol. So if an ME/CFS patient just wanted to see if they responded to rituximab by taking say a couple of infusions, would I be right in thinking that the protocol used for these initial infusions is not that important (provided safety procedures are followed).
Click to expand...

What is important is that right from day one the physician involved has committed themselves to checking blood tests on a regular basis and planning a long term treatment strategy. Once one has started eating someone with rituximab there is no way of putting the clock back. The immune system is altered and permanently so, although in most cases it settles back to normal between treatments.

And at the moment we still do not know whether the improvements seen in ME patients after rituximab are more than just a placebo effect or chance remission. Nor do we know that if it does work it is through the same mechanism as in autoimmune disease. We know virtually nothing. So we do not know whether the exact protocol matters. That being the case it seems foolish not to stick to one protocol and study the results in detail in a research unit. The problem is that physicians tend not to have a clue as to how complex B cell treatment is. I remember touring the US early on advising physicians and all they were interested in was the name on the drug label and how much money they would make. They were too busy to have to understand what the drug did.
 
L

lansbergen

Senior Member
Messages
2,512
Jonathan Edwards said:
Once one has started eating someone with rituximab there is no way of putting the clock back. The immune system is altered and permanently so, although in most cases it settles back to normal between treatments.
Click to expand...

That is one of the reasons I said it is not for me.
 
Anoirb

Anoirb

Messages
14
Jonathan Edwards said:
I am not sure it is accurate either !
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Again thank you for your sharpness and shining an objective light to this matter. May I ask what COULDN'T be right to this short clip?

And another question: Kolibri mailed me back and they've told me that based on their experience:
That is 1/3 recovers completely, 1/3 makes improvement and 1/3 makes no improvement.


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Annette Olsen

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