Benlysta

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!

Why is it sometimes so hard to sleep with a fever?

You would think not feeling well would be enough to MAKE us sleep! But it doesn't work that way. And since good old fibromyalgia nails me to an invisible crucifix of pain every time lupus makes me miss a night's sleep...oh not that I'm complaining, or anything...

I know there are some ppl with autoimmune illness who are concerned about having children

...and so here's the stuff on the health care bill and abortion rights.

Historic Health Care Bill Passes The US House Of Representatives...

and wears out one lupus patient.

I couldn't leave something this important undone, but it has been very hard to try and sift through all of the information, opinions, and passions.

Here's what I've come up with as being as representative as I could get over the past two days on The Bill:

http://donaldburr.com/healthcare.pdf

This health care reform campaign has been very much of a rollercoaster ride and I do not for one minute think it is over.

It is especially important that those of us who live in the U.S. and are coping with autoimmune disease in ourselves or our loves ones inform ourselves on how the bill might affect us and to let our representatives in the federal government know what we think about what is happening.

If you wish to contact your Senator about the bill quickly (the Senate has not yet voted on it) you are advised to phone or to fax. Email has been sent in large enough volumes that it may not all be being read quickly, and I'm told that mail to the Senators at their Washington addresses is still subject to the delay of search for anthrax or other dangerous substances.

My lupus is supposedly "fine"

But I've had some very hard times with health recently. I feel like all of my "diseases and conditions" are now on some kind of collision course with the side effects of the medications and of the enforced poverty and maybe even having to deal with being a bit older while still having to cope with All This Stuff...I don't know. I'm just incredibly tired! Like I could sit down and close my eyes and maybe feel like I'd had enough rest and be able to open them again after...a year.