One Patient's Positive Perspectives

Resuming Benlysta Infusions

Resuming Benlysta Infusions

This past week marked the restart of Benlysta infusions for my lupus under the care of my new rheumatologist.  For the first time since my lupus diagnosis two decades ago, I am seeing a new rheumatologist.  My new doctor participates in my employer’s group insurance plan and has an in-office infusion center covered by my insurance.  After 2.5 years of Benlysta, my infusions resumed with a mere 6-day lag required to get new prescriptions, get new insurance authorization and coördinate the transfer of my infusions to the new site.

From full-cash pay to HMO rheumatologist

In the past, seeing a doctor outside my insurance coverage meant paying full cash price for the entire cost of office visits and I did this for many years.  Although my earlier specialist was a première rheumatologist of great skill and knowledge, I felt strongly it was time for a change and for lowering out-of-pocket costs for my lupus treatment.  Although my insurance had no problem covering prescriptions written by my out-of-plan doctor, they would not cover his office visits, other procedure or infusions at his in-office site.

Infusion Center Hospital

In-Hospital Infusion Center

Instead, they required me to receive my Benlysta in a hospital outpatient infusion center covered by my HMO.  All along, I thought this was my carrier’s policy for all infusions, but learned only recently that this hospital limitation was specific to infusions prescribed by out-of-plan physicians.  Now, bringing all my rheumatology care under the HMO, it looks as though I’ll have no charges for infusions unless I see the doctor, too.  The Benlysta copays assistance program covers the actual drug copays.

Now, with my new doctor’s office so close to home, infusions may fit into my schedule during lunch breaks on Fridays while telecommuting from home.  During infusions, I’ll be able to use my work laptop to connect over the Internet to my office.  My previous rheumatologist and infusion locations were both a half-hour from my home, usually requiring a full hour of driving time, plus infusion time and doctor exams, requiring me to use a half-day of sick leave each time.

Slashing the medical miles

With only 3 minutes to travel to my new doctor and infusion site, sick leave used for treatment should drop dramatically!  Because of recurring moderate flares and plenty of bad lupus days,  most of my annual sick leave gets used up just about as fast as I earn it. Add to that a few “normal” non-lupus sick days, and I generally need all the leave time I can bank up.  My vacation days for “fun” get cut short using it to make up for sick leave I’ve exhausted.

butterfly clockNow, with most of my medical travel time almost eliminated, time off work for infusions is serious shortened or eliminated.  After some quick math calculations, I realized to my delight that I may conserve vacation equal to 8 days each year that I previously took off to go to the rheumatologist and to get infusions.  12 half days for infusions + 4 half days for the rheumatologist = 16 half days of sick leave (usually taken as vacation leave).

Wow, that’s a lot of time I’ve spent in my car and at treatments away from work… almost a whole day per month!

Is there a problem or two?

First, I didn’t get to say goodbye to my nurses at the hospital where I was getting my infusions for the past two and a half years.  I will have to go back and drop in on them with some flowers and a plate of brownies.  I want to thank them in person for their kindness and genuine concern.

Next, there will be the challenge of deciding how to spend my re-found vacation days!  It won’t be hard to select a couple of enticing destinations.  Perhaps head out on a new, exiting lupus adventure?  Do a little butterfly photography at Spring Butterfly Exhibit of the local Arizona Desert Botanical Gardens or the nearby Butterfly Wonderland? Perhaps, go to the mountains or visit my grandchildren?

Now, I’ll get to decide how to spend the recouped 8 days, instead of my lupus deciding for me!

A thank you is in order!

Thank you to these smiling infusion nurses who helped me every month.  I will really miss them!

Infusion Center Nurses

My Smiling Infusion Center Nurses
Thank you for 2.5 years of awesome care!

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Comments on: "A new lupus adventure in Benlysta infusions" (4)

  1. TheRunningMama said:

    great news. i went to an immunologist and am trying to work with him and my rheumatologist to find the best plan.

    • TRM, It is so important to keep pursuing the best approach, and worth the effort to search out the best answers for your auto-immune challenges. Thanks for your visit and sharing a bit of your challenge. LA

  2. That is great news. What an added bonus for you. I am sure you will not have any trouble figuring out where to spend the days. : )

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