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I don't really understand the significance of this b/c according to my doctor, you do not truly know if RTX has worked in any given patient until about six months after B-Cell depletion. So a patient could not have any improvement at 3-mos but then have an improvement at 6-mos and this is considered successful. Why would the Fluge & Mella Study not follow this same pattern and assume that improvements at 6-mos were due to chance?
The real problem is that Fluge and Mella used a scoring system that worked over a six week period so that the score at 3 months was actually for 6 to 12 weeks - which in retrospect one would predict was too early. But when they set up the rules for the trial they were not familiar with treating autoimmune disease.
So it is all very complicated but the bottom line is nobody can be sure the results of that trial mean anything.
Would this be the same for patients in the study (or who try RTX in general) who have had symptoms that did not fluctuate (or did every single patient who was selected have a relapsing/remitting type of illness)? I can only speak for myself in that when I had an improvement to a specific symptom, it was striking and noticeable both to myself and to all who know me (vs. other symptoms which have not yet improved). I have not been able to try RTX yet (so for me it was the combination of MCAS meds & IVIG) but none of my doctors would ever attribute what they are seeing to chance or coincidence. I have no guarantee that RTX will work for me but if it does, we will know it has worked vs. it being chance.
I don't understood how this could possibly be the case? Many physicians assume or wish the patient can get better with "wishful thinking" or CBT/GET or mindfulness/yoga or all kinds of things but when someone actually uses a specific treatment and then gets better and remains better, wouldn't it be from that treatment (especially if the person has been progressively getting worse for several years and did not have a fluctuating form of their illness)? Thanks in advance.