Sjogren's Syndrome with Neurological Involvement

For anyone who has been with me on this blogging journey, you know that I have been dealing with reoccurring aseptic meningitis.  For those of you who are just joining me, I suffer from Primary Sjogren's Syndrome (read more about that here) with neurological involvement.  Sjogren's (or SJS for short) is primarily an autoimmune disease that attacks the moisture producing glands in the body.  This may not sound awful but imagine having such dry eyes that your corneas are scratched and you can't see.  Or not producing enough saliva (which is what keeps your enamel on your teeth) and having severe tooth decay.  Not the end of the world but highly uncomfortable and a big blow to someone's self-confidence.  

In my case, in addition to the aforementioned symptoms, I also have reoccurring aseptic meningitis.  Since December 2011, I have had meningitis 8 times, and have been hospitalized 9 times.  The biggest challenge is that none of the doctors who have seen me, either in or out of the hospital, have ever seen a patient with this problem.  For my first three rounds of meningitis, the doctors assumed it was bacterial even though my lumbar punctures were coming up negative for bacterial, fungal or viral meningitis.  After my third bout of meningitis, I just happened to see my Rheumatologist for my semi-annual check up and we discussed this odd problem.  He told me that it was a rare but possible side effect to my SJS.  At this point, he put me on Plaquenil in the hopes of suppressing the SJS and therefore stopping the meningitis.  In April, I was hospitalized again and the doctor switched me to Cellcept.  While I was on Cellcept I was hospitalized in October so then I was switched to Methotrexate which is a pill form of chemo.  I was hospitalized shortly after that for a second time in October.  By the time I was hospitalized in December, both my Rheumatologist and the Rheumy in Ann Arbor that I went to for a second opinion decided that the Methotrexate wasn't doing me any good.  This is when the Rituxan was ordered.  It was scheduled for mid January but I was hospitalized the day before my first treatment.  

I was finally feeling well enough to schedule my first IV infusion and that will be starting tomorrow morning.  We're praying that the treatment works and that there aren't too many side effects.  According to my research, there still isn't much known about these SJS related CNS issues and they have not yet proven the efficacy of treatments like Rituxan (see here) but we will keep praying.  My friends and family joke that I am always the exception to the rule, and that if something weird can occur or go wrong, it will happen to me.  Let's hope that isn't the case with this chemo treatment!