One Patient's Positive Perspectives

4th Benlysta Infusion - Day 60

Today was my fourth infusion of Benlysta for Lupus, since they began in late August.  It has been one month since the last infusion, and I am beginning to think I may be just starting to feel the benefits.  The medical literature about Benlysta indicates the earliest benefits may be noticed as soon as 8 weeks after starting treatment.

Today, I woke up feeling unusually good, and had one of the best days I have experienced in weeks, or even months.  Just yesterday, my friend commented about my unusually spry steps while going up and down the choir loft steps at our church.  Feeling good yesterday and today was somewhat surprising to me.

After being out-of-town for several days, and arriving home late Saturday night after a three-day professional education conference in a nearby state, I expected that my lupus would flare from sheer exhaustion.  However, so far this trip has not been followed by a lupus flare!

This was a better outcome than I expected.

Walking, a misguided decision

During the first day of my conference I made a woefully misguided guided choice, and walked the distance between my hotel and the conference hotel twice.  Since there was no “straight shot” to get there on foot, I walked the long path that traversed elevated walkways and tunnels, meandering around and through several large (massive) connected shopping malls and resort hotels.  After committing myself to walking, I was soon filled with regret.  Severe lupus arthritis pain quickly set into my feet and legs, followed by the onset of neuropathy in my legs later that night after returning to the “safety” of my hotel room.

Soaking tired feet in the roman tub

To help alleviate my leg and foot pain, I soaked for over an hour in the luxurious roman tub in my room, until all the pain and stiffness had melted away.  Chatting with my husband on the phone, we devised a better plan for the next two days.

To my amazement, I felt reasonably well the second day.  I was even was able to get up and out to an early morning breakfast meeting on time!

This feat would ordinarily be very hard for me to accomplish on any given day, since waking up most mornings includes experiencing significant lupus symptoms.  My mornings are usually greeted with pronounced arthritis symptoms of joint stiffness, swelling and pain, along with measurable evidence of persistent central nervous system involvement, including cognitive deficit, reduced eye-hand coordination, “deep brain ache” and mental fogginess.  My arising sense of well-being is usually complicated by each morning’s adrenal insufficiency symptoms, which linger for at least an hour after a morning prednisone dose.

Definitely worth the investment!

However, with renewed wisdom and following my husband’s advice, I took taxis during the remaining days of the conference every time I went back and forth between the two hotels.  This simple preventative step was worth every wisely invested dollar.  As a result, crippling lupus arthritis pain did not recur during my trip.

Infusion Center Hospital

I worked a short half-day this morning, and then headed out from my office toward the hospital.  This afternoon’s Benlysta infusion treatment went very smoothly.  Realizing I had forgotten to bring along the adventure novel I started reading on my trip I sought a different diversion.  Finding some alternate amusements, I was quite contented to kick up my heels in the infusion center recliner and browse old magazines, watch an afternoon re-run episode of Law and Order, and munch on snacks while sipping spiced tea.

The next Benlysta infusion will be one month from now, early on Thanksgiving week.  The month ahead will be an unfolding adventure, as we watch and wait to see how Benlysta may begin to control and improve my lupus symptoms.  However, the outcome is in God’s hands, and I am thankful for His will to be done in my health and lupus, whatever that proves to be!

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Comments on: "Benlysta Infusions for Lupus – Day 60" (5)

  1. I just came across your blog…I noticed that you began treament in October 2011. I was wondering if your still taking Benlysta? I began my first treament today April 2013 and was wondering if your results were still positive?

    • Wendy: Thanks so much for your visit to my blog. Congratulations on your start to Benlysta! I hope it helps regulate and moderate your lupus as well as it has worked for me. I am still getting monthly infusions, and will be receiving another one next week. By next fall, it is hard to believe it will be two years!

      The improvement with Benlysta was not fast, but it has been steady and consistent. Overall, my general health and stamina have improved, and my CNS lupus involvement, fatigue, mouth ulcers and other overall systemic problems have shown the greatest improvement, while my arthritis and discoid rashes on my hands have shown the least improvement.

      However, the longer I have taken Benlysta, the better I have felt, overall. The progress is slow, and in my opinion took a while before my overall health began to slowly rebound as my lupus remained under consistently better control.

      Best wishes as you travel down this lupus and Benlysta adventure! LA

  2. Your blog gives me hope for my own Benlysta journey, which will begin this Friday. Thanks!

    • Ellen: My best wishes to you on your new treatment plan. Please drop back by and let me know how its going for you. Thank you so much for your visit to my blog! LA

  3. After reading the great post, I would like to share my opinion – Lupus disease, like any autoimmune disease, is an extremely very difficult condition to deal with. How can you battle towards something causing you immense discomfort when that something is your very own body? Because of this, lupus treatment is frequently restricted to controlling the signs and symptoms of lupus even though the cause of the disease is identified. In 90% of cases the cause is never identified, meaning a long course of medication for many. This is why an increasing number of individuals are turning to the all-natural selection of vitamins as lupus treatment. A leading light in natural lupus treatment is vitamin E.

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