Good news: I got approved for Rituxan! I am so happy. I am hoping that Rituxan works for
me. Rituxan is a biological that is administered via IV infusion. I'm okay with needles, but I hate getting IV. I'm scared
of IV needles. My veins are very small and whenever the nurses try to start an
IV, it takes forever. It hurts. Sometimes they even burst my vein. Then they
start poking around another vein and moving the IV needle around to see if they
can hit a vein. The nurses told me that my veins like to run. My brother is
taking me to get my first Rituxan infusion tomorrow morning at 8am.
What is Rituxan? Rituxan is a very
unique biological in that the treatment cycle is every four-six months. Rituxan
targets B-cells. Rituxan works by targeting the CD20 antigen on
normal and malignant B-cells. Then the body’s natural immune defenses are
recruited to attack and kill the marked B-cells. Stem cells (young cells in the
bone marrow that will develop into the various types of cells) do not have the
CD20 antigen. This allows healthy B-cells to regenerate after treatment. Rituxan is given intravenous over 4-5 hours. The time may
be longer depending on whether or not you have received Rituxan in the past, or
how well you tolerate Rituxan.
Rituxan may take up to 3 months before I start to feel the
effects. This anti-CD20 monoclonal antibody would appear to be a rational
choice for use when conventional therapy is unsuccessful because it depletes
the B-cells that are responsible for the production of pathogenic
lupus-associated autoantibodies, cytokines, and chemokines.
Some people who received Rituxan developed progressive
multifocal leukoencephalopathy (PML; a rare infection of the brain that cannot
be treated, prevented, or cured and that usually causes death or severe
disability) during or after their treatment. This is a very small chance. What do
I have to lose?
At first when I researched about Rituxan, I got really scared
when I read about all the neurological side effects. However, it’s a risk I’m
willing to take. I was nervous and didn’t know if it would work. So I went on
my twitter account and asked my lupus/rheum community if Rituxan work. It does.
They help calm my nerves and anxiety about Rituxan. They shared their stories
with me about their experiences. This gives me HOPE that it works for me. Getting approved for Rituxan
couldn’t come at a better time.
Prednisone is really not working
for me. My rashes are spreading. They are all over my face and chest. Every
other day I would get a fever of 101-103. Meaning that I have an infection that
my body is trying to fight. I have really bad migraines. I've been having chest
pain, tightness, and pressure. It makes me have shortness of breath. As a
result, my voice has changed pitch. I am so tired all the time. I have no
energy. I get very winded when I go to the mall, grocery store, or doing
anything. I usually want to go home fast. One of my pet peeve is people walking
slow. I use to walk really fast. However, I now walk slow cause I am tired and
my balance is off. I still need to take a shower sitting on a chair. My
hair is thinner-they fall out in strands not clumps. I am supposed to be
gaining weight, but I haven't gain any. Since being home I have lost more
weight. I weigh myself today and I am at 103lbs. How did I lose so much
weight. Food is still an issue. I am back on my diet of soups, fruits, and
salads. I still can't eat any type of meat at all. Sometimes I just eat plain
rice by itself. I don't enjoy my food. I just eat it to function. My stomach is
not use to having a lot of food in it. When my parents force me to eat too much
my stomach would hurt the whole day and night. It's very uncomfortable.
Last Saturday I put on a lot of
makeup to cover my rashes so I may go to the Simon Norton Museum with my
brother. However we did not go because I felt lightheaded and my heart started
to hurt. So I took a two-hour nap instead. When I woke up I noticed that I had
night sweats while I was sleeping. Hopefully this doesn't happen again when we
try to go this Saturday.
I had a little scare today. I
decided to take a shower. It wasn't a good idea. I wanted to take a
shower so that I can feel clean. I still sit on a chair to take a shower. While
I was in the shower my heart started to hurt, I couldn’t breathe, I felt
lightheaded and knew I was going to faint. I felt like throwing up too. I only
shampooed my hair really fast. Then I wrapped my body and hair in towels and
got out of the shower. I was so weak that I had to sit on the tile floor. I
still felt like fainting so I wiped my body really fast. I then put on my
clothes while sitting. I then opened the door and walk to the bed to sit down.
No body was at home. When my mom came home from work I told her what happened
and she banded me from taking a shower when no one is home. She is afraid that
something serious could have happened to me. As you can see I am still very
weak. My mom is probably going to wash my hair from now on. I’ve learned my
lesson.
xoxo,
Kat
Since you wrote this last night I'm assuming you had your first round of treatment today. I hope it went well! <3
ReplyDeleteI hope this works well for you, it was a wonder drug for me in a clinical trial and I went into an almost five year near remission of my lupus CNS and liver involvement. Now I am on Benlysta infusions.
ReplyDeleteHey Jocelyn! My infusion went well that Wednesday! However when I saw my doctor on Friday, March 22nd I was readmitted to the hospital for another 12 days. I went through chemo, and a lot was going on. Will update you soon.
ReplyDeleteHey Lupusadventurebetweenthelines! My doctor can't tell if my liver enzymes and liver inflammation were due to my lupus acting up or if it was a reaction to the Rituxan. We haven't cross Rituxan of the list yet. That's so amazing that you went into an almost 5 year remission with Rituxan. My doctor and I have been talking about Benlysta infusions; she thinks that I could benefit from it.