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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Retuximab coverage

Butydoc

Butydoc

Senior Member
Messages
790
Because of the recent events on Phoenix Rising and the way I have been characterized, I don't feel comfortable posting this on the open forum. I will respond to PM with the understanding this is confidential. Hopefully some will find this useful in the pursuit of coverage of this expensive drug. My wife use to run my office and is very knowledgable of this process. Presently I appear to be having a positive response to Retuximab at the 6 month mark.

Gary
 
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NelliePledge

Senior Member
Messages
807
Butydoc said:
Because of the recent events on Phoenix Rising and the way I have been characterized, I don't feel comfortable posting this on the open forum. I will respond to PM with the understanding this is confidential. Hopefully some will find this useful in the pursuit of coverage of this expensive drug. My wife use to run my office and is very knowledgable of this process. Presently I appear to be having a positive response to Retuximab at the 6 month mark.

Gary
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@Butydoc I think you need to move this to members only general me/cfs discussion this is in general me/cfs discussion on the main forum
 
P

perrier

Senior Member
Messages
1,254
Butydoc said:
Because of the recent events on Phoenix Rising and the way I have been characterized, I don't feel comfortable posting this on the open forum. I will respond to PM with the understanding this is confidential. Hopefully some will find this useful in the pursuit of coverage of this expensive drug. My wife use to run my office and is very knowledgable of this process. Presently I appear to be having a positive response to Retuximab at the 6 month mark.

Gary
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Please consider posting on members only. It is urgent for all the suffering to hear your details.
 
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geraldt52

Senior Member
Messages
602
I'm thinking that you might be overwhelmed with PMs, @Butydoc, as so many are desperate for such information. Before we overwhelm your inbox, maybe you should come up with some sort of "standard response", so that everyone who PMs you would receive the same thing, without you having to answer individual questions?...not trying to tell you what to do, just trying to be helpful. I do hope that any improvement you're seeing is a response to the Rituxan.
 
Butydoc

Butydoc

Senior Member
Messages
790
geraldt52 said:
I'm thinking that you might be overwhelmed with PMs, @Butydoc, as so many are desperate for such information. Before we overwhelm your inbox, maybe you should come up with some sort of "standard response", so that everyone who PMs you would receive the same thing, without you having to answer individual questions?...not trying to tell you what to do, just trying to be helpful. I do hope that any improvement you're seeing is a response to the Rituxan.
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Thanks Geraldt52 for your suggestion. This is really not a problem for me.

Kind Regards,
Gary
 
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