"How are you feeling?"

If I had a nickel for every time someone asked me this question...

Most of the time when I get asked this question, my answer is a reflex smile and "I'm fine and how are you?" even when it's the furthest thing from the truth. Sometimes someone will catch me off guard when I'm feeling really crappy. That happened last Thursday. I was sitting at my desk at the end of my work day trying very hard to get some work done in spite of screaming joint pain in my hips, an aching back and overwhelming fatigue. A colleague had quietly come through the front door and over to my office without warning.

"Laura, are you ok?" I could have started started to cry at that point, but caught myself. I did have to fess up that I was not doing so well at the moment. The concern in her voice was just too much.

I have taken more sick time than usual lately and most of my co-workers know what is up with me. I have never made a big secret of the fact that I have lupus. Honestly, when it comes to most aspects of my life, I am an open book. Otherwise, why would I blog, right? I probably over-share; in general, I talk too much. I know this about myself, but I have a heck of a hard time censoring myself and just shutting up.

So, here is the thing. I have a wonderful husband and 3 fantastic daughters. I have terrific friends and work with very caring people. Now when any of them ask me how I am feeling, I feel obligated to answer as honestly as possible. This requires quite a bit of reflection on my part, but unfortunately seems to be causing my loved ones some concern.  It's gratifying to know how much they care, but worrying them makes me feel guilty. This puts more pressure on me to feel better, so I can feel good about saying, "I'm fine!" and be telling the truth.

It's 5 days past my 2nd infusion. Today I am nauseated, woozy and my lupus symptoms are present and active.

C'mon, Benlysta, do your stuff! I want to feel better and I don't want to worry my loved ones anymore.

Infusion #2

The infusion area of my doctor's office

Nurse Helen prepares the infusion

My first infusion was on March 12th. I didn't feel like myself again until last Friday, March 23rd. The worst of the side effects for me so far have been the nausea and dizzyness. Really, it's not all that bad.

So today, I was off to see my primary care physician in the morning. He takes care of my other issues like hypertension. My blood pressure was ok  this morning - 132/84. Dr. Zhang usually reminds me that if I would just lose some weight I might not need so much blood pressure medication. Every time he says that, I nod and tell him, "Yes, I know." During this visit, he didn't say anything about my weight - I guess that he didn't want to waste his breath. I did tell him that I had started the new lupus medication, Benlysta. He's never heard of it. In his defense, he is not a rheumatologist.

Next it was over to Dr. Neuwelt's office for my 2nd infusion. Because I was so nauseated after the first infusion, I decided to have nothing but steamed white rice for lunch before I went. When I got to the doctor's office, I was weighed again -1 pound down from last time. Knowing that I am going be weighed every time is a bit of an incentive to watch what I eat. I was in the infusion area all by myself today. Other patients had their infusions earlier in the day and the only other person scheduled at 1 pm had cancelled. I had Nurse Helen's undivided attention.

Once again, I was give Tylenol and Benadryl as a pre-op to ward off possible allergic reactions to the drug. The benadryl seemed to make me even drowsier than last time - I actually fell asleep for about 30 minutes. When I woke up, I was nauseated again. Helen gave me Zofran - an anti-nausea medication given to people going through chemo. It took care of my nausea, but compounded my drowsiness. Helen wanted to watch me for a bit even after the medicine finished dripping. I convinced her that I was ok and she let me leave. My daughter picked me up and drove me home. I crawled up the stairs and slept for 2 1/2 hours. I was pretty groggy when I woke up.

I ate cream of wheat for dinner thinking that if I keep something bland in my stomach I can stay ahead of the nausea. Not quite. So I took some over the counter nausea medicine called Bonine. That in combination with my other meds are making me very sleepy. So, I will finish for tonight and let you know if anything changes. The 2nd infusion was NOT any worse than the first. My lupus symptoms are still present and active.

One day at a time.

Flares

OK. The photo is a bit dramatic and not representative of a lupus flare up. Sometimes it feels that way, though.

So, what brings on a flare up? With me it's usually a combination of things like stress, not enough sleep, stress, too much sun, stress, the holidays, and STRESS. Next thing I know, I'm having chest pains and/or shortness of breath, extreme fatigue and screaming joint pain in my hands, shoulders, hips and feet. I'm pretty fortunate that I don't have more than a couple flares every year.

What is worse than a flare? The drugs to treat it! Prednisone is really effective but the side effects make it my least favorite medication. The best way I can describe it is that it makes me feel like I have bugs crawling under my skin. It also makes me feel very jumpy and I have trouble sleeping when I am taking it. I'm very grateful that it's not my only alternative.

I have had a couple of depomedrol injections in the past. This is also a steroid but it doesn't make me skitterish like prednisone. The best treatment for me for is to treat the symptoms, rest and try to remove the stress from my life. Ha!

The biggest problem for me is that I sometimes "forget" that I have lupus and I run around acting like a normal person. It doesn't take long for my body to remind me that I am NOT normal. Still, it could be worse. I just have to try to slow down.

Diagnosis

I have probably been experiencing Lupus symptoms since I was 17 years old. I thought I was having a heart attack. Lucky for me, I was working at a hospital as a ward clerk at the time. I was having chest pains and asked the nurse I was working with if I was too young to have a heart attack. She sent me to the emergency room for an EKG. Verdict - my heart was fine. 

Over the years, I'd had bouts of fatigue and exhaustion, but chalked it up to being anemic. I was someone who LOVED basking in the sun, and figured that the butterfly shaped rash on my face was just part of my tan. It wasn't until 1990 when my twin babies were 2 years old, that I had to seriously consider there was something more than anemia going on with my body.

Part of my hesitation to go to the doctor was that I kept telling myself that I was overreacting to my symptoms. My mom was a nurse, so it was easy to start thinking that it could be something really serious, like cancer. So when I was feeling bad, I would just try to push through it. What finally made me seek a diagnosis was that besides the chest pains, joint pain and fatigue was that I was literally falling asleep in the middle of the day while taking care of my children. I would be reading the girls a story and would not be able to keep my eyes open.

Once I finally went to the doctor, it took 9 months to get a positive answer. Heart disease and rheumatoid arthritis were the first things ruled out.That was a big relief, but I started to get discouraged because my doctor couldn't tell me what was wrong. Was it chronic fatigue syndrome? No. Cancer? No. As odd as it might sound, by the time my doctor told me that I had SLE, it was a big relief. There was part of me that had started to think that maybe I was just a hypochondriac and making it all up! I actually had something wrong with me! Yay!

Uh, yay? Well, at least I wasn't crazy, right?

Here are some common symptoms of Lupus (which I got from the Lupus Foundation of America). I indicate with "yes" or "no" whether I have each particular symptom:

1. Malar rash – a rash over the cheeks and nose, often in the shape of a butterfly - yes.
2. Discoid rash – a rash that appears as red, raised, disk-shaped patches - no.
3. Photosensitivity – a reaction to sun or light that causes a skin rash to appear or get worse - yes.
4. Oral ulcers – sores appearing in the mouth - yes.
5. Arthritis – joint pain and swelling of two or more joints in which the bones around the joints do not become destroyed - a big yes!
6. Serositis – inflammation of the lining around the lungs (pleuritis) or inflammation of the lining around the heart that causes chest pain which is worse with deep breathing (pericarditis) - yes.
7. Kidney disorder – persistent protein or cellular casts in the urine - no.
8. Neurological disorder – seizures or psychosis - no.
9. Blood disorder – anemia (low red blood cell count), leukopenia (low white blood cell count), lymphopenia (low level of specific white blood cells), or thrombocytopenia (low platelet count) - yes.
10. Immunologic disorder – abnormal anti-double-stranded DNA or anti-Sm, positive antiphospholipid antibodies - I don't know.
11. Abnormal antinuclear antibody (ANA) - yes.
12. Hair loss - yes.

What I have is considered mild to moderate SLE and apparently that makes me the ideal candidate for the new medication, Benlysta.

Benlysta - Infusion #1

 

I feel like I'm starting in the middle of the story. Later I'll go back and fill you in on my history with SLE. At the moment, I feel compelled to start this particular blog because of the monumental step I am taking to feel better. Hopefully I will be conscientious about keeping track of my journey here.

On Monday, March 12th I received my first infusion of Benlysta in my doctor's office. The appointment was at 1 pm. The infusion area of my doctor's office consists of a narrow room with 5 recliners, 5 rolling IV poles and one very busy RN. Before we could start the meds, I had to be weighed - a necessary evil because the amount of Benlysta one is given depends on body weight. My vitals were taken as well - blood pressure - 135/85 and temp - 97.8. (Notice I didn't say how much I weigh!) Baseline vitals are necessary in case you start having a reaction to the meds. I was given pre-medication of Tylenol and Benadryl just in case I might have an allergic reaction - Tylenol for fever and Benadryl for itching, swelling or rashes. 

Since the ratio of patient to nurse was 5 to 1, it took awhile for her to start my IV and get the meds dripping. Apparently, Benlysta is kept refrigerated until it's time to mix it with the saline. Then it has to be at room temperature or it will clump. Once the IV was finally dripping, it only took an hour for the infusion. During the treatment, the only side effects that I experienced were drowsiness from the Benadryl, coldness in the infusion arm and mild nausea. My vitals were taken again to see if I had a fever - I did not.

Later that evening, I continued to experience nausea and some chills. Not knowing how I would feel the next day, I called my boss and we agreed that I should stay home. The day after the infusion, I still had nausea, dizziness and a slight headache. Not much appetite, either. The following day, I went back to work despite the nagging nausea that seemed to come in waves. One minute I would be ok, the next I would feel green and woozy. The nausea kept coming in waves up until Thursday evening. Friday morning I was back to normal.

Here are some quick impressions I have from the experience so far - 

     I took a backpack loaded with a small pillow, my laptop, a book, magazines and a journal. This was way too much. The nurse had a pillow for me. I type with 2 hands so I wasn't able to use my laptop - had to keep my IV arm straight. Next time I will take my journal and a magazine. The hour went by pretty quickly once the IV was started. 

     It's no fun being nauseated and dizzy, but I'm hoping that as my body adjusts, this will diminish.  Besides, it's much less than the lupus symptoms I deal with every day, right? My next infusion is on Monday, March 26th.