One Patient's Positive Perspectives

Benlysta may mean less steroids for lupus

Yesterday brought Benlysta infusion number seven for my lupus, and after twenty-one weeks, this new biologic drug is producing encouraging effects in controlling my lupus symptoms.  Although the changes and improvements have not been extremely dramatic, my symptoms have been consistently decreasing and successful partial reduction of daily prednisone dose was achieved.

When my doctor first suggested lowering steroids several weeks after I started receiving Benlysta infusions, my reaction was extreme skepticism.  He explained that his patients taking Benlysta have succeeded in lowering or even stopping their prednisone, even one who has kidney involvement.  Reminding my doctor that we have never been able to drop my dose completely, not even while taking Methotrexate and Imuran for almost ten years, I seriously challenged his suggestion.  He held the line on his request, and prescribed some 1 mg tablets to help me incrementally drop my dose every other week, outlining a schedule that would cut my dose very slowly.

Time to be a compliant patient

Shaking my head in disbelief, I went home and told my husband about the plan, and admitted my own serious  “lack of faith.”  Yet, I resolved to coöperate completely with my doctor’s advice and treatment plan.  After all, he has successfully managed my lupus for nearly 20 years, and I have many good reasons to trust his medical wisdom and advice.   He knows lupus, and I trust him.  It was clear I needed to stay a compliant patient and go along with his prescription, albeit stretching my faith a little in the process.

Later, when I asked a nurse at the hospital infusion center about it, she explained that all the other lupus patients receiving Benlysta there have lowered or eliminated their steroids.  Hearing her answer to my question, I thought just one word, “wow!”  My faith grew a little.

Next week’s doctor appointment will include reporting that my oral steroids are successfully tapered down to the doctor’s goal.  I didn’t think I could do it, but I did.  Now, each morning’s dose is one-half what it was during the entire past year.  Although there have been some really bad days, and a few days of missed work, over all the improvement on Benlysta while reducing steroids is indisputable.

So far, so good!

Now, I am curious  whether complete tapering off of steroids will work.  My doctor said that if we got to his first goal, we would talk later about considering that next step.  If so, it will probably take mustering just a little more faith.  For over a dozen years, our previous attempts to drop further below today’s prednisone dose have been entirely unsuccessful.  Each attempt caused flare, followed by increased steroids.

With Benlysta, apparently the lupus vs. prednisone game rules seem to have changed.  My prednisone dose is down, and my pain, fatigue, cognitive disruption, and other symptoms are still improving.  Although I observe a little increase in my symptoms in the week before each infusion, the overall effect of Benlysta on my lupus has been a continuing modest improvement.

Comments on: "Lupus and Benlysta after 21 weeks" (2)

  1. This is awesome news! I hope that you continue to see “modest improvements” and are able to further decrease your prednisone dosage. Keep us posted!

  2. Wow! What an encouraging post! Congratulations on your big achievement, and thanks for sharing with us! (hugs) 🙂

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