#108 - More About Rituxan and Lupus

First of all, I apologize for the delay in this follow-up post.

I wanted to add a bit more information about off label use of Rituxan in treating systemic lupus.

First of all, let's talk about "off label".

This is a very important term to consider when reviewing the recent findings regarding lupus and Rituxan.

Off label use means prescribing a medication that has not been FDA (Food and Drug Administration) approved, yet, for a certain condition.

Rituxan is used for Non-Hodgkins Lymphoma.

Those of you who read this blog regularly know that my eldest sister has been battling with lymphoma this past year. The Rituxan treatment has put her into remission and saved her life.

Rituxan has also recently been approved by the FDA for treatment of rheumatoid arthritis in conjunction with Methotrexate.

Off label uses include:

Chronic lymphocytic leukemia (a type of cancer of the blood and lymph system)

Waldenstrom's macroglobulinemia (a certain type of cancer of the blood)

Immune or idiopathic thrombocytopenic purpura (ITP) (a blood disease)

When a medication is found to be beneficial in the treatment of certain medical conditions, there are occasions when that medication may be used "off label" for similar medical conditions.

In regards to systemic lupus...

Rituxan has been used to treat certain cases of lupus that have been non-responsive to other treatments AND the condition is life threatening.

Rituxan is in clinical trials (research) for more expanded use in the treatment of lupus.

Quite frankly, I got caught up in the excitement of this research, twice attempting to sign up as a test subject and twice being turned down.

There has been buzz via the internet of Rituxan as being the "miracle drug" for systemic lupus.

And people like me who are so desperate to garner full remission...

well, we become suckers for such kudos.

I became so excited with the idea of full remission from this miracle drug that I threw away years of training in interpretting research. I cast aside my clinical knowledge regarding introducing new medications as curealls of difficult to treat diseases and flew happily down that long river called...

da-Nile.

Rituxan IS a miracle drug for some people with lupus.

But, it is NOT a cure-all for everyone with lupus.

And MedScape had released very serious information on December 19th.

Two people had unexpectedly developed progressive multifocal leukoencephalopathy and subsequently died.

TRANSLATION: Rituxan (also known as Rituximab) is NOT a miracle drug. The off label use of any medication can have serious consequences... and we all must be cautious about diving completely and unquestioning into a mode of treatment.

Let me give you a little inside scoop about drug research and systemic lupus.

Those of us with lupus are not on the top of the list for research in pharmaceutical companies.

Our numbers are few compared to many diseases. (TRANSLATION: Will the company profit by investing in research and development?)

Our current status is incurable.

Our symptoms vary widely.

Lupus attacks anything and everything in our bodies, so our disease is pretty naughty and unpredictable. That makes for bad research candidates. Our disease does not progress in a predictable manner like other diseases.

Researchers need to have patients that have a disease with some predictable progression. They are obligated to make sure that their testing does no further harm to patients.

When you think lupus... it is almost the Russian roulette of disease research.

You and I live with this darn thing and we know that it is really hard to know what lupus is going to do to us from one day to the next.

How are researchers supposed to do their job when they can not confidently predict that their research will not harm test subjects?

The reality right now for those of us with lupus, is that we are benfitting from research that was intended for other diseases.

Such is the case with Rituxan.

Rituxan was developed for the treatment of cancer.

Now people with rheumatoid arthritis are able to benefit.

And only SOME of us with lupus will probably benefit in the long-term from Rituxan research.

This is no one's fault.

This is our reality.

We are living with an unpredictable, potentially life threatening disease that is as inconsistant as a feather in a wind storm.

And that unpredictability for many of us is one of the most difficult things to live with in our challenges with lupus.

How do you plan your future, heck how do you plan doing your chores today... when you don't know from one moment to the next how lupus is going to go after you?

So we cling fast to new treatments that promise full remission.

We are only human after all.

And many will benefit.

Rituaxan has been a lifesaver for a number of people with systemic lupus.

I think that what we all need to take away with us from the recent fatalities from Rituxan intervention is that we need to stay alert.

We have to educate ourselves.

And for those of us with lupus who are unable to do so, we need caregivers and a support network that will advocate for us.

And lest we forget, two precious people died this past year while undergoing treatment with Rituxan.

To their families and friends, I personally express my condolences.



For more information visit the following websites:


Progressive Multifocal Leukoencephalopathy Information Page: National Institute of Neurological Disorders and Stroke (NINDS)





MedlinePlus Drug Information: Rituximab (Systemic)

Rituxan Approved for Rheumatoid Arthritis - The Facts of Rituxan


Methotrexate - Dosage - Side Effects - Drug Interactions - Warnings

RITUXIMAB - INJECTION (Rituxan) side effects, medical uses, and drug interactions.