Rituximab (August & September 2016)

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Rituximab is given by slow injection into a vein, normally in the chemotherapy unit of a hospital.  It is used mainly to treat cancer of the white blood cells such as leukemia and lymphoma, it destroys both normal and malignant B cells that have CD20 on the surface,  Rituximab therefore can also be used to treat a manner of diseases - too many B cells, overactive B cells or dysfunctional B cells.
Rituximab is used in Autoimmune Diseases after it was found to be effective in RA (Rheumatoid Arthritis), it has also shown efficacy in other autoimmune conditions such as MS and systemic Lupus.  The licence for its use however due to its toxicity is greatly restricted in the UK and requires specialist funding after applications are submitted from Consultants for individual patients. 
My application was submitted in the February of 2016 and approved in the early summer of 2016 and I had my first loading dose in the Chemotherapy Unit of Kings in mid August 2016, the hope was that from its combined effect, it would result in the elimination of dysfunctional B cells from my body, allowing new healthy B cells to develop from my lymphoid stem cells and therefore make me well. 



After the initial dose, I was due the second dose two weeks later which combines to make a loading dose introduced slowly into the body.
I was completely and utterly floored after the first dose, during the procedure I didn't show any major adverse effects but the following day felt like I had been run over several times. With next to no immune system, I developed a cold which kept me in bed for 3 days and killer headaches that made me cry, I remember 2am one morning crying sat on the bathroom floor, I felt shit, looked shit and had serious doubts about getting through the second dose.  A very close friend with MG was in her 10th year of having Rituximab and god only knows how she has done this, I wanted to die, everything hurt and ached, I felt like I was out of my own body.  The exact feelings are very hard to explain to anybody that has never experienced it. 



The second dose took hours to go into my body due to side effects during the IV, it was stop start all day nearly. The prednisolone I had that day made me feel so so sick.  Again I was floored and now with my immune system even lower going near anyone with a cold or even a sniff was impossible.  It took me a couple of weeks to come round and I started back at work immunocompromised completely and in desperate need of a flu jab.
On average they suggest it takes 16 weeks to show benefit.  It mid October I saw my Consultant and we came to the conclusion that the Rituximab had not really worked for me, I was completely gutted and asked for another shot with it, due to its toxicity my Consultant decided this was not going to happen for me so back to the drawing board....

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