Jonathan Edwards
"Gibberish"
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Hi professor Edwards. This is my very first post on Phoenix Rising, I have been sick for a little over year now avidly following this site for most of that time, and I just want to say I am beyond grateful for everything you do, you give people hope. Just so I can be clear on what you are saying though, in theory if I were to get rituximab and respnd positively but then relapse, I would be able to keep taking it whenever I have a relapse in the future? Also, would you say it realistic for me to think that Rituximab will be available in the US within the next ten years?
In RA, some patients have had repeated courses of rituximab as required over a period of up to 15 years. Some develop low Ig levels and need to switch to other treatments. The policy at present in ME is to give repeated top up courses for about 18 months to prevent any early relapse. It seems that a proportion of people will manage without further doses for quite long periods. But generally speaking yes, rituximab can be repeated if needed.
Whether rituximab becomes available for ME in the next ten years depends firstly on whether its effect is confirmed in the phase 3 trial. If it confirmed that will be in about 2 years time. And if confirmed then I think it likely that because rituximab is available for use in other conditions there will be a number of physicians prepared to use it off label. Reimbursement through insurance or health care systems is another matter and is hard to predict at this stage. Normally further trials would be done before official licensing but I have a feeling that in this case things might move forward a bit more rapidly - since there is no other treatment available.