Sunday, March 25, 2012

Will Rituximab Make My Ears Turn Pink? Or Increase My Appetite for Cheese?

Jelly Belly image found on Wikimedia, here. I love 'em all. 

Awhile back, I shared my wah wah wah diagnosis of subacute cutaneous lupus erythematosis with y'all.

Or, in other words, my spots.

I really hated those spots. Not only because they weren't particularly attractive, but also because it was another indictor that my autoimmune disease was busy at work destroying yet another set of my body's cells. Dr. Young Guy changed up my medications at that point to include an immunosuppressant, Gengraf, a drug most commonly used in much larger doses to prevent transplanted organ rejection, but also used to suppress the autoimmune response.

About two weeks after I began taking Gengraf, my spots and splotches just magically seemed to fade and then disappear.

Woot! I was thrilled.

I was less than thrilled when eight weeks later, they returned. And brought dozens more of their spotty friends.


Secretly, I had hoped that my fatigue problem would disappear like my spots did. It didn't. And when my spots returned, it seemed that my fatigue just ratcheted up a notch.

So I trotted back to see Dr. Young Guy, bringing gifts of gourmet jelly beans. I always bring Dr. YG and his staff treats, because I always give my favorite people treats.

Dr. YG and I discussed my frustration with my very active disease process in spite of the use of several DMARDs (disease modifying anti rheumatic drugs). Our new plan of attack will include continuing all of the drugs that I'm currently taking: prednisone, plaquenil, Gengraf; and the addition of another: Rituxan.

Rituxan - or rituximab - is considered a biologic agent - a whole new world of drug experiences for me.

Wow, man.

Not only is it a biologic, it's a chimeric biologic, which means  two things: biologic -- a drug made from components of living things such as specific proteins; and chimeric -- (referring to a mythical beast made of different animals) made by fusing human proteins and animal proteins (frequently mouse) to create a very specific antibody. Rituxan or rituximab will attack a subset of my white blood cells -- B cells -- thought to be part of the destructive autoimmune chain of events.

Yup. You read that right. I'm going to be receiving itty bitty pieces of mousies right into my veins. Just like these:

sketches of mouse (top left), chimeric (top right),humanized (bottom left), chimeric/humanized (bottom middle), andhuman (bottom right) monoclonal antibodies.Human parts are shown in brown, non-human parts in blue. 
image found here

Rituximab is given via an intravenous infusion, and in the treatment of Sjogren's syndrome, most commonly is given every six to nine months. Dr. YG prescribes this drug with great caution, since it has the potential for very significant side effects, and only after the patient has tried - and failed to see results - from other more commonly used DMARDs.

The list of unusual but very significant problems related to rituximab is extensive, but the list of side effects which are most common isn't short, either: headache, fever, chills, nausea, heartburn, flushing, weakness, or dizziness. Among others.

Every time I re-read the information which accompanies the use of rituximab, I can't help but wonder if the risk is worth the benefit. But I have come to the conclusion that I am willing to give it a try under the very capable supervision of Dr. YG and the outpatient infusion department.

 When this drug is effective for Sjogren's syndrome, the benefit is significant. This from a 2010 study:

Effectiveness of rituximab treatment in primary Sjögren's syndrome: a randomized, double-blind, placebo-controlled trial.
Meijer JM, Meiners PM, Vissink A, Spijkervet FK, Abdulahad W, Kamminga N, Brouwer E, Kallenberg CG, Bootsma H.
University Medical Center Groningen, University of Groningen, 9700 RB Groningen, The Netherlands.

In the rituximab group, significant improvements, in terms of the mean change from baseline compared with that in the placebo group, were found for the primary end point of the stimulated whole saliva flow rate (P = 0.038 versus placebo) and also for various laboratory parameters (B cell and rheumatoid factor [RF] levels), subjective parameters (Multidimensional Fatigue Inventory [MFI] scores and visual analog scale [VAS] scores for sicca symptoms), and extraglandular manifestations. Moreover, in comparison with baseline values, rituximab treatment significantly improved the stimulated whole saliva flow rate (P = 0.004) and several other variables (e.g., B cell and RF levels, unstimulated whole saliva flow rate, lacrimal gland function on the lissamine green test, MFI scores, Short Form 36 health survey scores, and VAS scores for sicca symptoms). One patient in the rituximab group developed mild serum sickness-like disease.
These results indicate that rituximab is an effective and safe treatment strategy for patients with primary SS.
This study looked specifically at the effects on Sjogren's syndrome fatigue in the use of rituximab:

Reduction of fatigue in Sjögren syndrome with rituximab: results of a randomised, double-blind, placebo-controlled pilot study
S Dass, S J Bowman, E M Vital, K Ikeda, C T Pease, J Hamburger, A Richards, S Rauz, P Emery

Results: There was significant improvement from baseline in fatigue VAS in the rituximab group (p<0.001) in contrast to the placebo group (p = 0.147). There was a significant difference between the groups at 6 months in the social functioning score of SF-36 (p = 0.01) and a trend to significant difference in the mental health domain score of SF-36 (p = 0.06). There was one episode of serum sickness in the rituximab treated group.
I receive my first dose of rituximab in two weeks. I'll keep y'all posted. John and Greg will have a field day with the whole chimera/mouse/Julia thing. Hoo, boy.


Anita Rowe Stafford said...

Scary, yes, but worth a try, sounds promising! Best of luck with this!

Leslie at SugarAndSpiceADK. said...

I share your trepidation, Julia, and also your'll have to keep us all posted on your progress! Methotrexate, now by injection, seems to agree with me, FOR NOW, anyways, but we all know how things can change! Best of luck to you....

FFW said...

Crossing my fingers for you---I always used to laugh at all the warnings on drug commercials-now that I have had a few, they aren't so funny.

Maybe you'll get "incredible sense of smell" and "ability to chew through sheetrock". And, dare we hope, "unexplained weight loss"....

Amy Junod said...

My Grannie used to say, "If it's not an ass it's an elbow..." meaning that it's always something. Sorry to hear the splotches came back. (Not to mention more stupid fatigue)
You should expect a mouse themed Christmas display this year.

stephanie said...

Dang it. Sorry, Julia. It feels good having confidence in your doctor, though, doesn't it? Good luck.

Julia Oleinik said...

Thanks, everyone. I appreciate your support.

FFW: YES! Unexplained Weight Loss!!! Um....sheetrock chomping, not so sure...

Amy: Girl. We need to consider what Pinky would think about that.