#79 - Rituximab

I went to my rheumatologist last Tuesday.

Treatment is at a standstill.

Hubby came with, which I prefer, in order to offer his observations on how Ms. Lupus has been behaving and also as a second memory during doctor's visits in case I forget something said or recommended.

Cognitively, I am off, and I have been for a very long time. It doesn't show up on the MRIs I have had in the past. The migraines are practically daily and they are often debilitating.

The most frustrating symptom is that I am not who I used to be.

Before the lupus crash I had a mind that was sharp as a tack.

Very sharp.

God put a racehorse in between my ears, and until a few years ago, that racehorse was running full steam ahead.

So I have lost a lot cognitively.

My husband can see this when others can not.

My racehorse is running, but now more like a family pet instead of the runner it used to be.

People who do not spend much time with me would probably never notice. I am able to compensate a lot for the cognitive losses because of what I had before the lupus tap danced on my brain.

This is not sleep deprivation.

This is not depression.

This is not middle age or the little moments of forgetfulness that occur when we are distracted.


This is something intangible and difficult to observe except for my husband and son.

They get it.

There are times when I can not talk. I just can't put two words together to make sense.

When I am in a situation that requires conversational interactions, very quickly I disintegrate into the attention span of a two year old on a rampage.

People probably think I am terribly rude and a horrible listener.

I wasn't like this before.

Anyway, Hubby was able to explain this to my rheumatologist last week.

And we asked again about trying to get me into a clinical trial with Rituximab.

My rheumy is going to push hard to see if I can get in.

I am at a great disadvantage because I have a more "controversial" form of lupus. It is called ANA negative lupus. The medical experts can not agree on ANA negative folks as having lupus status or not. Only 5% of us diagnosed with lupus are ANA negative.

Figures I would have to go about having lupus the hard way.

I know I am fortunate for having a rheumatologist who really knows what he is doing.

Here's how clinical trial research works.

They want to test the most common form of the disease first.

They want those people with lupus who fit the majority of those diagnosed.

So I do not know how this is going to play out.

I have a postive skin biopsy consistent with systemic lupus. That skin band test is considered 98% accurate. You can not get any more accurate than that in this kind of medical testing. To the best of my understanding that is a more efficient indicator of lupus than the ANA blood test.

I have to go back to the neurologist.

I hate going to the neurologist.

Some of my most unpleasant and invalidating experiences while being pushed through the lupus diagnosis treadmill occurred at the hands of some thoughtless professionals in the neurology field.

I fired the last guy.

You know you can do that.

They do work for you no matter how pompous some doctors may behave.

Okay, it is a luxury where I live, because there are more choices.

I have a new neurologist, but it is exhausting to establish a new working relationship with yet another doctor.

This new guy doesn't know me. He has no history with me as I have progressed through this mess.

So I dread the rehashing of symptoms and hearing the same innane questions that they all have to ask you before you get treated with any respect.

Gosh.

I just had an "AHA!" moment.

This must be how my former counseling clients felt when they came in to see me after being treated by a kerjillion other counsleors.

Now I think I get it.

Thanks Ms. Lupus for another lesson.

Getting back to the whole Rituximab thing.

Because of the cognitive problems I continually am battling, my rheumy may be able to state my case to the research team.

I may not get pain relief from this treatment, but I have said this countless times...

I can live with the pain.

It's not the pain that gets you in the end with lupus.

It is the unpredictability.

It is not knowing from one hour to the next if you are even going to be able to go to the store, or even your own front yard. It is bloody impossible to plan anything with other people.

It is the loss of quality of life issues.

Like planning your day around maybe, just maybe, having enough energy to push the vacuum across the living room rug.

And the cognitive changes.

Hubby was in tears when the rheumy stated he will try hard to get me into this clinical trial.

Hubby misses the "old Loretta".

I do too.

But, I will never be the "old Loretta" even if I get all my thinking back.

Something in my life just snapped and changed me forever.

You can't go backwards on that.

But, still in all...

It would be nice to read books together again, and talk through the whole evening, and make music together, and trust me to go in the kitchen and not burn down the house...

you know little things we can take for granted.

I would like to drive a car.

I would like to talk on the phone more.

I would like to write more.

I would like to be more involved in the lives of those I love without disintegrating fifteen minutes into having a conversation.

Gosh, I am whining.

I am totally lacking any perspective today.

I have a loving family, a home, food, clothing, friends, and heck...

this blog...

and a computer to write on...

and millions of other little luxuries that are so easy to take for granted.

Living with lupus involves the daily task of mastering your feelings over knowing what you have lost.

That is really hard.

I know what I have lost.

And yet, I live a life that millions and millions of people all over the world could scracely dream of.

So I feel greedy and hungry.

Greedy for wanting more and more, to squeeze everything I can out of this life.

And hungry for what I have lost.

I feel conflicted.

And there is this faint hope that this cancer drug, this Rituximab, may be a bridge to help me cross over to something more than what I have right now today with this lupus.




Read more about Rituximab here:

Cancer drug shows promise against lupus