Wednesday, November 11, 2009


I was myself involved in a trial two years ago of a different medication, not this new Benlysta.

My med has helped some lupus patients who have tried it but it didn't make the primary endpoint in the study...although the drug is being used for rheumatoid arthritis and non-Hodgkin's lymphoma. The problem with it not being approved for lupus is that insurance often then won't pay for it for anyone with lupus...and it is very expensive...this is a common problem with other meds that are being used for lupus if they haven't gone generic, or if the patient takes enough meds so that even prices for generics can be a problem (how would I know about this financial quandary? don't ask!)

Although I am WAY WAY more than ok with the trade, I have to admit that in my case, I swapped nasty evil rotten kind of intense lupus for something else: a merely annoying case of catching-every-bug-that-goes-around-all-freaking-year-round. Well, usually merely annoying. I've not had great experiences when I've caught the flu...

...however, the people who say "lupus is like having the flu" forget to add "or actually it can be like having the flu, or not. Or can be like having the flu with someone also having split your head and every single one of your joints open with a hammer. Or can be like having the flu with a huge ball of fluid where your heart should be and while losing 1/3 of your own blood volume in a week, oh, and Alzheimer's, and did you know even your eyebrows can seem to hurt when every hair follicle is inflammed and ..." Well, I won't go on, but I COULD go on. Every lupus case is different and for each of us our individual flares of the disease can be very different. No simple summary will do here.

Jumping around from topic to nowhere back to topic again (because I have a fever and because it is after 3 am): as far as the I-now-know-I-will-SO-catch-your-cold thing...I learned recently that my B cells (component of immune system deliberately reduced by the med I tried) are not exactly quite bounced back yet. Low normal is 80. My level is: 2.

And I was very grateful for this medication and still am. But I hope this gives an idea of what some of us are willing to put up with, and with joy in our hearts, to reduce lupus activity...I consider the drug I took to be no less than a miracle for me! Even though it didn't make it out of the study. And even though if I needed more I was up a creek w/out a paddle because I could never have found the $$$ for it.

So, you may understand why there is a lot of interest in this "Benlysta™ (belimumab)" which has actually shown effectiveness in Phase III trials. For reals.

For us lupies, BIG news. GO, Benlysta!

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About Me

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I've travelled the distance from an Ivy League college to decades of enforced poverty--because I've needed to qualify for government health care in the U.S., since being diagnosed with lupus at the age of 23. I have a personal blog at that I've had so long I'm probably stuck with :) My other blogs are here on blogger...