Thanks to a member of one of my newsgroups for a link to this recent study: Rituximab therapy for primary Sjögren's syndrome: An open-label clinical trial and mechanistic analysis
"In primary Sjögren's syndrome, a single treatment course of rituximab was not associated with any unexpected toxicities and led to only modest clinical benefits despite effective depletion of blood B cells."and a discussion of the the same study on Medscape: Reuters Health Information: Rituximab Only Modestly Beneficial in Primary Sjögren's Syndrome Feb 01, 2013
"Improvements in tongue dryness, thirst, oral discomfort, and overall fatigue were statistically significant, albeit modest, but there were no significant improvements in joint pain, stimulated and unstimulated whole salivary flow, tear production, or ocular surface dryness."Only modest clinical benefits....hm......
Let's review my mousie energy chart, shall we? And, um, disregard the highlighted mousie ears, tails, and enlarged eye because I want to minimize the goofy elements in this post.
If we examine the graph, specifically the Y axis, near the top of the graph is a mark which indicates estimated energy levels before the onset of Sjogren's syndrome. Note also the distance from this point, to the intersection of the X axis.
THEN note the height of the curve of energy response, which occurs somewhere between one and a half and four months post infusion. I approximated that at the peak of my response to rituximab, that I had regained about half the energy reserves that I had pre-autoimmune disease.
To some, that amount may seem "moderate", but to me regaining half of my previous energy levels is vitally important. That half made it possible for me to attend my kids' weddings with enough energy to truly be present and cherish the day. It means that Christmas cards were sent, presents purchased and wrapped, and that I was able to spend quality time with my family and friends over the holidays. It meant months without daily naps. And months without experiencing that awful physical sensation of reaching the absolute bottom of my energy reserves which results in cold sweats, shaking, feeling profoundly sad and frustrated, and hours in bed replenishing those reserves.
That "moderate" response gave me back a good chunk of my life. Not all of it -- but a big piece. I consider the importance of that chunk of energy far more valuable than "modest" or "moderate" worth. I guess it's just a matter of looking at a glass and deciding if it's half full, or half empty, don't you think? For me, the rituximab glass is definitely half FULL.
I wonder if this sentence is a reflection of the outdated assumption that Sjogren's syndrome's biggest physical problem is dry eyes and dry mouth?
"...improvements in tongue dryness, thirst, oral discomfort, and overall fatigue were statistically significant, albeit modest, but there were no significant improvements in joint pain, stimulated and unstimulated whole salivary flow, tear production, or ocular surface dryness."Of course, this is an important observation. Yes, dry eyes and dry mouth are an integral part of this disease. But for me, these things are a major annoyance, not a life changer. The symptom that robbed me of my job, my hobbies, several of my friends, and changed my life forever is FATIGUE.
What good is a moist mouth or not having to use eyedrops if I'm still unable to do anything except eat and sleep and bathe? Don't these researchers get it? While I'm glad that the authors of the study recommend continued research, their conclusion leads me to believe that the research world isn't seeing the forest for the trees:
"Despite the limited benefits in this small study, the authors argue against abandoning research on rituximab for these patients. "Larger randomized, placebo-controlled clinical trials...are needed to further evaluate the clinical efficacy and safety of rituximab therapy for primary Sjögren's syndrome," they conclude."If this were a political campaign, I'd recommend that the bumper stickers for candidate rituximab would read: IT'S THE FATIGUE, STUPID!"