One Patient's Positive Perspectives

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Waiting for morning fog to lift

Last week I drove to the hospital on a Thursday morning.  To get up in time to drive safely, despite my CNS lupus, I had to arise extremely early that morning.  So early, it was practically the middle of the night!

To be clear-headed enough to drive, sometimes takes several hours.  While waiting for the mental fog to lift, I take medications, exercise, drink coffee, shower and hope the fog “burns off” early.  Setting an early morning medical or work appointment means getting up long before the crack of dawn to start my daily brain-summoning rituals.

Getting infusions back on schedule

Usually, my Benlysta infusions are every fourth Friday.  My local government employer shuts down all the buildings and turns off utilities on Fridays, and most of the other employees work a four-tens schedule.  The offices are open Monday through Thursday from 7:00 a.m. to 6:00 p.m.  These hours work fine for everyone else, but for a middle-aged gal with lupus and CNS involvement, 7:00 a.m. is downright un-doable!  I am grateful that my employer has agreed to extend my ADA accommodation to permit a workable alternative schedule.

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Working an accommodated schedule

So, I work in the office for the last seven hours of the normal business day, and an extra hour after everyone else goes home, and I work from home on Fridays.  This works extremely well from a lupus standpoint.  However, there are some challenges with this schedule for me as a supervisor, because staff are working for three hours before I arrive.

I try to schedule as many of my medical appointments as possible on Fridays, so when I am taking time off for health reasons, it has minimal impact on my availability to coworkers during core business hours.  A few months ago, my scheduled infusion date arrived while I was hospitalized getting intravenous antibiotics for a whopper urinary tract infection, so my infusion had to be postponed until after I was released and finished taking antibiotics.

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Rescheduling Infusions

Over the course of receiving Benlysta for my lupus, there have been several schedule adjustments.  Once, for bronchitis it was delayed a week.  Then, for a trip out-of-town on business, it had to wait until the Monday I came back.  Once, a bad sinus infection delayed my infusion for a week.  Recently, we visited our son, his wife and their family over a long weekend that fell during my normal infusion Friday.

Infusions can be later but not earlier

With Benlysta, getting the infusion earlier than four weeks from the previous one is not allowed.  So, when the schedule gets interrupted, the infusion is always delayed instead of happening earlier.  I always try to keep from postponing delayed infusions for a whole week.

Because of the way Benlysta works, the Blys proteins come back quite quickly when Benlysta’s effects wear off.  I have noticed that an extra week between infusions isn’t a good idea, because my lupus quickly starts to kick into flare mode before the extra week is over.  But, after only a couple of extra days’ delay, no so much!

My normal strategy has been to shift the infusion schedule back toward Fridays over the course of a couple of months.  I try to reschedule the first month on a Monday, the following one on a Tuesday or Wednesday, then Thursday, until I finally back to a Friday infusion schedule.  So, starting next month, my infusions will once again be back on a Friday schedule.  This is what works the best for me, so I am always glad to get back to this routine.

Changing routines has its benefits

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Multi-tasking while infusing

There has been nice benefit of temporarily changing the schedule and time of day for my infusions.  Over the past couple of months, I got to know some different infusion patients than those I usually see, and met a couple of nice new nurses.  One nurse I really liked was on loan from the hospital’s cardiology unit, and we had a great time visiting and getting to know each other.

She also mentioned something new to me about the Benlysta dispensing instructions.  Usually, Benlysta has always been prescribed for infusing over a one-hour period.  However, on the medication label on the bag, instead it called for dispensing the drug over two-hours.  So, the nurse followed the written instructions while I made myself comfortable and settled in for a little longer stay.

As a result, I had time to write a personal letter while waiting for the lab to prepare the infusion.  Then, I had enough time to log in with my tablet computer and get in a couple of hours telecommuting from the hospital, catching up on email and work.  I always enjoy any opportunity to work with my feet kicked up in a recliner, sipping coffee, while looking out a beautiful picture window at the city’s skyline.  I was truly multi-tasking, and didn’t mind it one bit!

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Comments on: "Benlysta infusions for Lupus after two and a half years" (3)

  1. Thank you for blogging about Benlysta. I was dx with SLE a year ago although I’ve been sick for quite sometime. I also have Addison’s Disease. My rheumatologist has had me on 10mg of steroids daily and I take Plaquenil twice a day. My flare up just keep coming back more frequently and hit me harder each time. I’ve been on 30mg of steroids now for almost two weeks. Sadly I suffer from the start of osteoporosis and I now have stress fx in my feet from when I’m able to move my joints…I like to run. I know crazy 🙂 anyways, my rheumatologist wants me to start Benlysta. My only concern is that I too am effected neurologically and I have neuropathy. I thought I had read somewhere that since it had not been tested with those who suffer with neurological effects from Lupus that we shouldn’t take it. Maybe I read old information. I just know I am so ready to feel better again and soon! How quickly did you start to see a change in how you felt? Right now I have pneumonia and still in this nasty flare up. Extremely ready for a med change! 🙂 God is in control and with His direction I will persevere. That’s the plan anyways. 🙂

  2. Danielle said:

    I’ve been recently diagnosed with Lupus (SLE) and my doctor is going to start me on Benlysta and your website has been a breath of fresh air… I love your little blogs about your treatment. I’m very scared though because I suffer from depression already and one of the side effects of the treatment is depression. I was wondering did you have any issues with depression? The biggest thing that scares me is the depression and the fact that I do not have a great support system in place. Any advice would be great, love your site.

    Danielle

    • Danielle, I am so glad to hear from you, and that you shared about your recent diagnosis. I know it can be a huge relief just to get an accurate diagnosis that explains why you have been sick. It can be good just to be able to give it a name! It really helped me put a small measure of certainty into a very unpredictable disease.

      About the depression… Mine is better taking the Benlysta. I have CNS involvement, and historically it has caused attack in the portion of my brain that deals with emotions. Depression is common among lupus patients or any patient with chronic illness, but I have never heard personally of Benlysta making it worse, or causing it. To the contrary, if the Benlysta can help you be healthier and feel better, that is huge in comparison and is more powerful than any nudge toward depression. Benlysta helped control the aspect of lupus that was attacking my brain. Depression caused by lupus is treated by first treating the lupus. Getting the lupus under control gets the depression under control, just like lupus attacking any other organ. The treat the lupus, and the problems with the organ that was in trouble will often improve.

      If I were you, I would CHOOSE to anticipate feeling better, and then if depression happens to appear, talk to your doctor about it, but choose not to be afraid of it or expect it to happen. That’s my advice. There are many good medications like Wellbutrin that can help if depression becomes a problem when you are taking Benlysta. I would first suspect the lupus as a cause, not the medication. You doctor will know what to do if it comes up. Focus first on getting your lupus under control, and any normal depression you have from your lupus negatively impacting your health and outlook on life will have a better likelihood of getting better, too, not worse.

      When I do have episodes of depression, one of the most important things I do to combat it is to pray, read the Psalms, play the piano or listen to uplifting music and sing. I personally choose to play or sing hymns, because they tend to focus on God and praising him and fill my heart with gratitude and help me remember how much God loves us. When you are thankful and have a heart of worship, there is not much room for depression to take control, even if it is present, our heart and mind can push back against it by the things we choose to focus on. I first learned about this from a pastor who had his doctorate in professional counseling. He would go into the sanctuary and pull out a hymnal from the pew and send it home with the person he was counseling and “prescribe” 30 minutes of hymn singing each day for those who were depressed or discouraged. He reported that it always helped people.

      The other tactic is doing some regular exercise. I know that many lupus patients and others with arthritis pain often think it is an “evil” thing, but exercise does a few really important things for a hurting person. The natural chemicals in your body (endorphins) are released that work like a pain killer to reduce the perception of pain, it helps clear the body metabolism of toxins caused by the ongoing accelerated cellular destruction of lupus, helps lupus brain fog “lift”, and helps boost emotions.

      If you have questions, or want to share more about how things are going, please come back by here and feel free to chime in again! It is so good to hear from newly diagnosed patients. It is because of other patients like you that I write this blog. It was too scary for me when I was diagnosed and there was no internet or good information out there. A major goal of this blog is to reach out and encourage other lupus patients.

      Thanks for letting me help in some small way.

      LA

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