Tuesday, March 27, 2012

Getting Ready

Delightful image found here. 

Before I can get my infusion of mousie-parts, aka rituximab, my doctor wants to be absolutely certain that I am not harboring any undetected germs, since this drug will make me more vulnerable to infections.

So he poked and prodded and examined and temperature-d and  auscultated me, then sent me off to have a skin test for tuberculosis. It's called a PPD, a Purified Protein Derivative (or sterilized mashed-up proteins from the bacteria that produces tuberculosis) injected into a superficial layer of the skin. It takes really good injection technique to create the perfect just-below-the-skin bubble, or wheal.

Never perfected that technique, myself. Good thing it was rarely a requirement of a dialysis nurse.

After the bubble of PPD is absorbed into the skin, those that have previously been or currently are infected with the tuberculosis bacilli will form an angry red raised area around the injection site in 48 - 72 hours.

Mine was negative, as expected, which means that I'm all ready to get going on the mouse infusion.

I'm anxious about this. Not so much about the potential side effects, which is actually what I SHOULD be worried about.

Instead, I find myself thinking a great deal about how I would react if for some reason I was unable to take this drug, or if the drug just didn't help me at all. I haven't felt this hopeful about a medication since I began this whole journey eight years ago. And I have probably set up some unrealistic expectations in my mind for it's effects, even though I know this is not a good idea. Yes, there's some good data out there about reduced fatigue and increased saliva, but I need to keep reminding myself that there hasn't been one single study that has reported a cure for this disease after use of this drug.

Not one.

Nope. Autoimmune disease at this point is still without a cure. So I am trying to tell myself this:

Hey! Julia: Don't be getting all weirdo if you don't feel "all better" after taking this drug. Don't expect to have energy and ambition oozing from every pore. Don't expect to be able to eat a sleeve of saltine crackers without water. Don't expect to see all of your spots disappear within minutes of injection. Just.........don't expect anything. Instead, wait and see what happens.

A tall order for me. I don't listen to myself very well.

My first dose won't be given for two more weeks. And then another infusion in another two weeks. And then wait another six weeks to see if I'll benefit. Aaargh.



ShEiLa said...

It is so hard to wait and see if you benefit from 'any' drug... I am still at an impasse on Plaquenil... I asked my ophthalmologist... if I don't know if it is working or not??? should I keep taking it??? I guess that is a question for my rheumatologist.

I am anxious to hear how it works for you... once in awhile my hubby will comment that 'when I am cured of Sjogren's... when you don't have it anymore' and I chuckle because I see it as a life sentence.

I need to do some reading on this drug you are being infused with... I know nothing about it. (well except what I have read here)


annie said...

When I saw the name of the drug rituximab, I knew I had heard of it before, but couldn't immediately place it. Then I remembered that one of my friends, who suffers tremendously from chronic fatigue syndrome, told me it was used in trials for cfs patients, and some had good results with it. It is also a drug used for chemotherapy.

I'm hoping you will see improvement and have no side effects with it. I'm the sort of person who, when given a new medication, will always check for side effects, and who worries I will react to the med ( unfortunately I usually do). Best of luck Julia, and I know you will keep us posted.

FFW said...

I think it's natural to be hopeful. Without hope, we are just stuck in these broken bodies, waiting for time to pass.

Thinking positive thoughts for you!