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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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not a waste of money if you are willing to take the risk to start with.I think this is the problem with Ritux at the momento - you have a one in three chance of wasting thousands of dollars.
Dear funky queen. I'm sure you know and understand how much many of us want to know more about your response to rituximab. Can you outline more please. Or please direct me to where you have done this. What about other patients you have met there. Please tell us about everything. I'm a heartbroken mother,who can't bear watching my daughter suffer so horribly with no relief.thank you.Yes, I'am, and yes, i have it at OMI
its true Cathy and free.of coursePatient assistance elegibility from that particular drug company is very generous. Just saying.
Dear funky queen. I'm sure you know and understand how much many of us want to know more about your response to rituximab. Can you outline more please. Or please direct me to where you have done this. What about other patients you have met there. Please tell us about everything. I'm a heartbroken mother,who can't bear watching my daughter suffer so horribly with no relief.thank you.
Does your doctor think you have any issues that Ritux won´t fix?
Thank you for your responses. Merci. I just would like a clarification SVP: before you started the Rituximab, was there some test you had to take to determine your eligibility? In other words, is there some marker for autoimmune disease. Forgive my ignorance.Oh, ok. No, i absolutely do not have others auto-immunes issues except ME ( provided that ME is only a matter of autoimmunity, which I doubt). My tests for autoimmunes diseases were very completes, so it's something that I'm pretty sure about.
yes of course , i was treated too in OMI with RITUXAN since december 2014 in same time, and there are some bio markers to be sure if you are ME ! SIBO test, NK cell panel .......health historyThank you for your responses. Merci. I just would like a clarification SVP: before you started the Rituximab, was there some test you had to take to determine your eligibility? In other words, is there some marker for autoimmune disease. Forgive my ignorance.
Merci. And what is your improvement, if I may ask. What changes?yes of course , i was treated too in OMI with RITUXAN since december 2014 in same time, and there are some bio markers to be sure if you are ME ! SIBO test, NK cell panel .......health history
Thank you for your responses. Merci. I just would like a clarification SVP: before you started the Rituximab, was there some test you had to take to determine your eligibility? In other words, is there some marker for autoimmune disease. Forgive my ignorance.
There is currently no test that determines if someone who has ME/CFS is a good candidate for Rituxan or who will be a responder. This is not just at OMI, but anywhere. The science is not there yet.
@Gingergrrl I read a very recent study sayin' ( in essence) that some markers in Ritux's responders were differents, compared to these same markers before the treatment, but not in non -responders.
As I am very poorly organized, and that I put loose all the studies I read, I may have a hard time to find it you now, lol, but I know that you follow too ME research, so you probably seen it