After recent setbacks on Tocilizumab/ MTX the rheumatology team would like to try me on RITUXIMAB .
Having read some of the posts here and visited many Rituximab web sites, I have reached the conclusion this is not a drug to be taken lightly. My biggest concern is PML after JC Virus re-activation, a rare complication which is nearly always fatal. I know the odds are quoted at 25000/1 & although those odds would be great for the lottery not sure they're so good for Russian Roulette. I know fatalities can occur from other causes such as infections or reactions but with proper monitoring you still have a fighting chance. There is no such luxury with PML. There is no cure and It can happen at any time and is a known issue with Ritux. Life expectancy is probably two or three months before the brain is destroyed. To me this sets this drug aside into a different category & I'm not prepared to go there. Other drugs with this association have been withdrawn from the market. I would be interested in your thoughts on this and whether you had all been informed of this association before treatment started. The warnings are well publicised on the various web sites but I wonder how many bother to read them. The last thing I want to do is spread fear and alarm to patients who could well do without these to add to their problems but I wonder if tests could be done to check for PML antibodies. If you've never had the virus it can't be re-activated. This would apply to 50% of patients who could then have peace of mind. Is there any research taking place to find a cure for PML itself I also wonder. There are many questions and I'm sure some of you may have the answers to what may be an irrational fear of what could be a very effective drug