One Patient's Positive Perspectives

Phoenix Skyline

Today marks one-year since I first sat in this same infusion center in a Phoenix hospital and began receiving monthly infusions of Benlysta (belimumab) for my lupus.

Looking out the windows I can see the downtown Phoenix skyline in the distance bordered by hazy blue sky above and a green urban forest canopy of mature landscape trees across the base of the clustered skyscrapers.

A range of desert mountains completes the scene, flowing like a wide brown ribbon behind the tall buildings, separating the verdant foreground from the cloudy blue expanse above.  It hardly looks like the desert from this vantage point above the tree tops!  But, don’t be fooled by appearances, the temperature outside was over 100 degrees today.

Benlysta quieted Lupus

Today, as I contemplate the beautiful view outside, I compare the state of my health today with one year ago.  The path of this year-long adventure has taken me to a better place, overall improved health and a measurable restoration of my quality of life.

I sit here grateful for the funds made available to pay for my treatment, since the costs to my insurer for Benlysta infusions in the hospital setting (the administration site that my insurance requires) are massive.  The total one year cost is in the neighborhood of double my annual salary!

Assessing my Lupus

So, as the Benlysta drips into my vein, I assess the state of my lupus.  A year ago I would have assessed my “healthiness” at about 50% and now I would rate it at about 75% to 80%.

Today, I am clear-headed with central nervous system involvement quiet and under good control, significantly reduced arthritis inflammation, feeling pretty decent.  I am even having a hard time remembering the last time I had nasal or mouth ulcers from my lupus. It has been a long time since I suffered with deep bone ache in my arms and legs that lasted for more than one day.  My lupus neuropathy was flaring a month ago, but has quieted back down in the past few weeks.

Better health emerged

Benlysta slowly and methodically made a real difference, like the almost imperceptible growth of the beautiful flowers in my garden, that start as tiny seedlings and slowly develop into a blooming swath of beauty. So too, my lupus has quieted and better health has emerged in the place of rampant symptoms, malaise, fatigue and pain. What a great improvement one year of effective treatment has made.

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Comments on: "Lupus and Benlysta Infusions – after one year" (14)

  1. I wonder if your Retuximab treatments helped the Benlysta work. Just thought about it-like some kind of combined effect over the years. No way of know, but interesting. Are you still taking Benlysta and how long do you think it really took to “kick-in”?

    • EM: I think I tried to reply to you a couple of days ago, and the computer glitched and I lost the paragraph and gave up. If I already answered you, please forgive my duplication.

      Yes, I gave your question some thought and realize that I was just coming out of remission when I was able to start the Benlysta. Rituxan had put me into a near miraculous near remission, and the fall from that improved health started slowly but was picking up steam full bore when I finally got on the Benlysta. However, it had clearly not risen in activity to the level it was before Rituxan.

      Before the first biologic, I was experiencing CNS lupus that was disabling and lupus had turned on my liver, as well. I had failed the other cancer chemo/transplant drug treatments and was quickly facing long term disability/early retirement. Eventually, I would have been in the same place, except for the intervention of the Benlysta.

      All things considered, I do not believe Benlysta could have controlled my lupus as well as it has if it had escalated to the same level it was before Rituxan. Sad to say, the more expensive drug is less effective, for me, but has lower risks than did Rituxan. I still have flares with the Benlysta, but they are more moderate and less damaging, and my CNS lupus is relatively quiet (hurrah!)

      Thanks for asking such an excellent question! My hopes for you are that you can find an effective treatment plan. Hang in there, and be your own advocate for another try at something new. Keep me posted on your progress, okay? LA

  2. I’m so glad that Benlysta has been a good experience for you and thank you so much for sharing your journey. I just had my 10th monthly infusion and I am committed to completing the full year cycle regardless of the fact that my symptoms have not improved and neither have any of my labs. I still have hope until then. My rheumy did warn me that there was a small chance of success, but I’m glad I made the effort to try. My fatigue, pain and usual flares have been awful. Also for me, the worst has been the monthly bouts of severe depression (suicidal thinking) that I don’t have when not on this medication. It hits me every month about 2 weeks after each infusion, so I can see the pattern. Looking forward to that being gone when these infusions are over! It has been a real battle and anyone looking to take this drug should be sure to have lots of support and keep communications open with the people that you trust. I’m 56 and I was diagnosed in 1979.This has been a very long dance.

  3. everything looks good enough, but what about all side effects that may kill …
    the year you was under treatment , I suppose you was out of regular life due to awful side effects. so tell me that it’s incorrect. but THE QUESTION is if benlysta terminated the disease 100%? If it’s worth to get through all that suffering?

    • Mag:

      Thanks so much for your comment and excellent questions! It may surprise you, but I worked full time and kept up all my normal life activities while receiving my first year of Benlysta infusions for Lupus. I am still working full time and continuing to get infusions.

      Unlike methotrexate, a cancer drug I took for my Lupus for 10 years, Benlysta does not make me sick to my stomach or make my body feel bad. Sometimes, I do get tired for a couple of days after each infusion, but other than that, I can do all my normal stuff after my infusion, even go to work or go out on date night with my husband! Benlysta doesn’t destroy my whole immune system, but it leaves most of it still working, so I get less infections than when I took cancer chemo drugs.

      Benlysta doesn’t cure lupus completely, NOTHING does. But, it does make a difference by making all my symptoms much better, without bad side effects. I am now on less drugs, less steroids and feeling much better than before my infusions started. Before Benlysta infusions, I almost had to go on disability and stop working completely, but now I feel good enough to keep working for several more years. (I am 55 years old now.)

      The biggest problem with Benlysta is the price. If your insurance won’t pay for it, it costs way too much to pay yourself. But, if your insurance will pay for it, there is a program from the company that makes Benlysta that can pay your infusion co-pays if your salary is not too high.

      I hope I answered your questions good enough to help you. I would be glad to answer any other questions you have about Benlysta or lupus.

      LA

  4. Thank you for you blog, and I glad for you Belysta helps, we here in Holland we are still waiting for Belysta, the Europian Commision agree with this medicine, but know we are waiting for the ensurrend to prove and will pay for the traitment. I hope it will work for me, because, what Marianne, are saying, I also can say when I had a time out, the one flares after an other. But thank you for sharing this with us, have a nice day en week, enjoy life.karin.

    • Karin: Thank you for your comment and for taking the time to share about Benlysta in Holland. Here in the U.S. we are interested to see what Europe will do as far as covering this expensive drug, especially in light of the changing world economic climate. Best wishes to you in your lupus adventures! LA

  5. Marianne said:

    I’m glad to happen across your review. I completed BenLysta infusion #9 today. I’ve had one of the worst flares of my life in last month. Been getting pretty down thinking this drug isn’t going to work for me either. My ANA is now negative so Dr says its working. But I can’t say that I feel the difference. For 5 years I can’t even say when one flare has ended and the next one started. They all seem to run together. Hoping my results will soon mirror yours. Thanks for giving me some hope!

    • I hope for you to soon have some good results, too. You will notice from some of my posts that I was a very slow believer in Benlysta. I was spoiled by the rapid response my lupus had to Rituxan infusions several years ago, snapping into a near remission that lasted five years. Slow and steady is the approach Benlysta takes. Thank you so much for your visit to my blog and commenting about your Benlysta story. LA

    • Marianne: Hang in there and keep yourspirits up! Remember there are other drugs the doctors can give you if Benlysta doesn’t help enough. My first year was not an amazing recovery, but over the long haul it really helped. It would be great if you could stop back by and share again about your progress. LA

  6. By the way I am in Phoenix as well!!!

    • LWLori: Thank you so much for your comment and stopping by my lupus blog. Let me know by email if you are interested in getting involved with the Lupus Foundation of America here in Arizona. Post-recession we are working on re-establishing a presence in Phoenix and planning some great upcoming events, with some lupus experts as speakers, and possibly a Lupus Walk in the spring. I am a member of an advisory committee working with a local representative and the national LFA office. Some exciting lupus awareness, patient education and advocacy opportunities. Email me at LupusAdventurer@cox.net if you would like more information about how to get involved. It would be great to meet you! LA

  7. I’m so glad it’s working for you! I just wish I had the ability to get benlysta! I’m sure it would change my life

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