I am so happy that Rituxan is helping some with ME/CFS, but I don't know...the thought of taking a chemo type drug for this illness is unnerving.
Does anyone else feel the same? Maybe it's just because I have a hypersensitivity to meds and have other immune diseases, but it just seems so....drastic.
Again, I am happy it works for those it works for and YAY, but wow....it's a little scary.
No. I am not scared of Rituxan! I think proper knowledge is the key.
Rituxan has nothing to do with the old kind of chemotherapeutics, which are very unspecific drugs with an impressive list of side effects. Rituxan in comparison is a very modern drug and very specific in what is does. It eradicates B cells and nothing else. No hair loss, no heavy nausea, no vomiting. Nothing you associate with classic chemotherapeutics. Of course, RTX has side effects, too, but there is good chance, you will get only mild ones during treatment.
Also it is on the market for 20 years, which means we know how to handle the drug quite well. It is used in lot of other conditions with great success, like in RA and some kinds of Leukamias and Lymphomas. Also in other autoimmune conditions.
What the Norwegian group does, looks very promising. At least for a subgroup of patients. And so far, nothing very dangerous happened to ME patients, which have been treated with RTX. At least not in Norway as far as I know of. One patient in Germany though says his condition worsened with RTX. Though we don't know much about this case. But anyway, that's why we need to do proper studies first. And the Norwegian do exactly that. After the phase III we know more about risks.
Of course, nobody knows yet, if ME is autoimmune. But the cases, which have been helped by MTX, RTX and Cyclophosmphamid are a strong hint, that this might be the case. At least for 50% of the patients. I want to add, that we don't know either, if ME is caused by a pathogen. A lot of speculation, but no ultimate proof.
Also I am not aware of any other drug, which got at least some patients into total remission. I mean, that they feel 100% healthy again. Our condition is horrible and our quality of life is very poor. So any kind of chemotherapeutics would be in theory appropriate for us. The benefits would outweigh the potential risks by far. People get RTX for much less horrible symptoms and circumstances.