Looking for advice on rituximab treatments

[Amber]

Hi, I’m looking for people who are currently on rituximab either long-term, or have just started it. I am currently on Hizentra IVIG treatments and firdapse. But not feeling great so my doctor said to do some research on rituximab. Curious what your symptoms are, how good do you feel afterwards? And how long does it last?

[LUCIA]

A mi tambien me interesa si alguien lo está tomando, concretamente para qué enfermedad y por qué se lo han recetado. Yo he leido que lo prescripen para ciertos tipos de cancer como el linfoma y no sé què interaccion puede tener con el tratamiento para enfermos lems. Yo tomo diaminopiridina, mestinon e infusiones de inmonoglobulinas. Con éstas ultimas llevo años y me las ponen cada 3 meses y es francamente lo que mejor me ha ido. Con estas pautas, si que he oido que a pacientes les añaden rituximab y no sé la asociacion con nuestro sindrome autoinmune. Gracias, quien pueda y esté medicado, por favor, decidnos en qué mejora nuestra enfermedad.

I am also interested if anyone is taking it, specifically for what illness and why it has been prescribed. I have read that it is prescribed for certain types of cancer such as lymphoma and I do not know what interaction it may have with the treatment for lemmy patients. I take diaminopyridine, mestinon, and immunoglobulin infusions. With these last ones I have been years and they put them on me every 3 months and it is frankly what has gone best for me. With these guidelines, I have heard that patients are added rituximab and I do not know the association with our autoimmune syndrome. Thank you, whoever can and is medicated, please tell us how our disease improves.

[carol Oliver]

Hi

i am currently getting rituximab every 6 months for the last 18 months and my next infusion is in December. I take Firdapse and monthly ivig.  Since starting the rituximab I have seen continuous improvement. I still have some walking disability but most of my dysautomonia symptoms have subsided or reduced immensely   I wish I could say that I’m a Lems patient that can take minimum firdapse and then ride a bike. But I take max dose and still have difficulty. Any improvement is always welcome  I currently have returned to some travels after 3 years of not being able to do much.  I am a fan of rituxan and will continue to get it as long as there’s improvement.  Good luck and feel better everyday. Carol

[Author]

Posts