Thursday, March 10, 2011

Welcome to the lupus world, Benlysta!

It's only the first drug approved for lupus in about 50 years. Big news, ya think?

I could not be more thrilled. I've seem to have had my own serious lupus whipped for now into milder lupus. But this drug is a new and safe alternative for ppl with serious lupus. As a lot of us know, long-term high dose prednisone (corticosteroid) has side effects of major doom. I myself got the cataracts in both eyes, obesity and metabolic syndrome, diabetes, serious emotional lability (how to not make friends and influence people), the infamous "moon face", and I don't feel like listing more. I really welcome the new drug as a beacon of hope for people I know and will meet in the future who have serious lupus goin' on.

Some info from the Lupus Research Institute. I wrote out the url for ppl whose technology is giving them a bad hair day.®-lupus-breakthrough-millions-sufferers
You can even see my doctor there!

It got through the FDA, a miracle in itself, and if it works as expected I think we've got a milestone on our hands!

Where have I been? The people who have now dropped me wanted to know...

I know I'm not the only rheumie (rheumatic diseaser) who disappears when I get really sick. My thoughts are with my family, my friends, and everyone whose lives I touch in some way. But I've been down for the count. I can't tell you how many times I've fallen asleep with the computer in my hand. Sometimes it slips out of my hand so I'm glad when I'm ill I use it in bed and not somewhere where it can be grasped by gravity for a big trip. I've also fallen asleep while eating...literally with a fork in my mouth full of food. I get TIRED.

I had about three months of The Mystery Disease. Diarrhea, vomiting, dehydration, falling, breaking ribs, the beat goes on. It started with a GI infection at the end of August and ended with my rheumatologist changing my meds on December 9 (I remember the date!) Even my gastro doesn't know what was wrong with me.

So I was able to have Christmas. However, in January, I had at least three bouts of flu-like disease with fever. For at least two of these, my symptoms matched what was going around in the community. Don't know if my immunosuppression played a role. I basically have no B cells, secondary to an experimental trial which included rituxan some years ago...which made my lupus a LOT better.

Anyway, after the flu-y thingies were over, I ended up with a lot of fatigue. But the fatigue got worse. Then I started being breathless with exertion. I have seasonal asthma; was it showing up? Docs said maybe. Soon I couldn't hang up my clothing. But I've been sick like that before when I've had lupus lung involvement. But my sed rate was not high. Then I started shaking. This was weird. It was like I was developing some scary tremor. I could not type on the computer easily or hold a drink w/out spilling. I made an appt with my primary care doctor and had to be very careful driving there. I was lucky that the people in his office are so nice that one of them volunteered to straighten out my car in the parking lot.

Primary care ordered blood tests. The next day, I tried to drive, in the rain, an hour south to go to a family event. I got a phone call and it was from my doctor. He said I had a very severe anemia and I had to go to the ER to be admitted to the hospital. I had to change plans and go north.

I stopped at home to just grab a few things since I'm allergic to most soap products etc. And I realized I just couldn't drive the car any more. My incredibly wonderful friend, who herself is in a bad lupus flare, came to my city to pick me up and took me back to her city to the hospital!

I had my first (at least the first I knew about; never know about surgery) blood transfusion. I was in for three days.

When I came out, I felt a LOT better...but I was tired. I had a bit of pain in my lungs which I had mentioned to the hospitalist but I must look like a total hypochondriac or something. And of course no one could hear anything in my lungs. I think we often feel when something's up before the signs and symptoms become apparent and before we show up in some trouble on any tests. Anyway, now I've got pneumonia. I'm being treated with antibiotics. And probiotics in the hope that I don't get what IBS in combo with antibiotics do to dehydrate me. So far, so good.

I've gotten out of touch with folks again. This has happened so often in my life...sometimes for months or even a year or two. Naturally people think I don't care; I'm not interested; I'm unreliable; etc. And so I lose people.

I'm at the point where I want to make a huge email list that I can use to send out one email: sorry, I'm sick again. Please pass this on... But an awful lot of people don't get email. And an awful lot of people start seeing frequent claims of illness as just making excuses for not contacting them or that I am a useless and irritating whiner/malingerer.

Anyway, such is the life of some of us who are majorly chronically ill.

I DO care and I think of those I care about, those I've promised to volunteer for, everyone in my life, even when I can't be there in any kind of not-just-spiritual way.

Sigh. And please excuse what I'm sure are some errors in this post. I feel lucky to know what day it is, at this point.

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...