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.
http://lupusresearchinstitute.org/news/discoveries/11/03/09/fda-approves-benlysta®-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!
Thursday, March 10, 2011
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.
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.
Wednesday, January 19, 2011
How Many Other People Out There Have To Take Showers Constantly Or They Get Blisters?
I'll be surprised if a lot of people raise their hand.
The blisters are painful, so I'm always the one in the hospital becoming a huge fall risk, since I have to drag myself out of bed to the shower alone if no one will help me (I'm sure they think my rash and blisters are imaginary and just my idea of a little fun. I really do need to come in armed with a photo sometime, except I'm not sure I want to put myself through that even to get a good picture.)
Anyway, my skin seems really irritable today, so it's going to be at least two showers if not more. Splish splash.
The blisters are painful, so I'm always the one in the hospital becoming a huge fall risk, since I have to drag myself out of bed to the shower alone if no one will help me (I'm sure they think my rash and blisters are imaginary and just my idea of a little fun. I really do need to come in armed with a photo sometime, except I'm not sure I want to put myself through that even to get a good picture.)
Anyway, my skin seems really irritable today, so it's going to be at least two showers if not more. Splish splash.
Saturday, January 15, 2011
Do I like hot flashes waking me up at 4 am?
That would be a NO.
I didn't think surgical menopause would be a lot of fun, and years of autoimmuning have certainly raised my pain and suffering threshold. So hot flashes are not the end of the world. But mine seem to be on the severe side (can my body do ANYTHING mildly?) and I am going to be pretty pissed off if they don't at least burn some calories.
I didn't think surgical menopause would be a lot of fun, and years of autoimmuning have certainly raised my pain and suffering threshold. So hot flashes are not the end of the world. But mine seem to be on the severe side (can my body do ANYTHING mildly?) and I am going to be pretty pissed off if they don't at least burn some calories.
Tuesday, December 21, 2010
Where I've Been
August was really busy because I moved, and of course the physical part of moving was an exhausting daily project. And I'm not finished with it yet!
At the end of August, I developed a GI problem. Diarrhea, usually severe, as well as nausea and vomiting. Daily.
I must have been very ill, because I even lost weight, something that just doesn't happen to me since prednisone packed on the pounds years ago. I can be at death's door, refusing food, and still my body is convinced that fat must be preserved for an imaginary famine.
Anyway, this mystery thing made me very sick, and very weak. I had quite a few falls. I cracked my ribs. I may still have a jaw injury to deal with.
I could only survive on enough OTC Imodium to most likely raise the stock price of it, as well as prescription ondandsetron. I saw several doctors, and was seen in ERs several times as well.
My genius rheumatologist seems to have thrown a lightning bolt to the thing, improving me enough to give me my life back. I was surprised, since this is out of his specialty area. I saw him December 9 and have been working on catching up with months worth of communications and responsibilities ever since! Dr. Wallace had better not retire during my lifetime, is all I can say,
Looks like I might be able to make a blog entry once in awhile, now :)
At the end of August, I developed a GI problem. Diarrhea, usually severe, as well as nausea and vomiting. Daily.
I must have been very ill, because I even lost weight, something that just doesn't happen to me since prednisone packed on the pounds years ago. I can be at death's door, refusing food, and still my body is convinced that fat must be preserved for an imaginary famine.
Anyway, this mystery thing made me very sick, and very weak. I had quite a few falls. I cracked my ribs. I may still have a jaw injury to deal with.
I could only survive on enough OTC Imodium to most likely raise the stock price of it, as well as prescription ondandsetron. I saw several doctors, and was seen in ERs several times as well.
My genius rheumatologist seems to have thrown a lightning bolt to the thing, improving me enough to give me my life back. I was surprised, since this is out of his specialty area. I saw him December 9 and have been working on catching up with months worth of communications and responsibilities ever since! Dr. Wallace had better not retire during my lifetime, is all I can say,
Looks like I might be able to make a blog entry once in awhile, now :)
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About Me
- Beep
- 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 http://beepbeep.livejournal.com that I've had so long I'm probably stuck with :) My other blogs are here on blogger...
