One Patient's Positive Perspectives

Benlysta Journal

quill-penBlog posts following a five-year Benlysta lupus treatment journey

Thank you so much for joining this part of lupus adventures!

LupusAdventurerSigAR

8/7/11 Lupus, and praising God for scheduled Benlysta infusions!

8/23/11 Lupus and the Next Chapter

8/26/11 Benlysta Infusions for Lupus – Day One

9/9/11    Benlysta infusions for lupus – Day 15

9/24/11 Benlysta Infusions for Lupus – Day 30

10/4/11 Lupus and Benlysta after five weeks and five days

10/12/11 Lupus and Benlysta after six weeks and six days

10/18/11 Lupus, Benlysta, and a helpful FedEx delivery

10/24/11 Benlysta Infusions for Lupus – Day 60

11/19/11 Lupus and Benlysta after 12 weeks

11/24/11 Benlysta Infusions for Lupus – Day 90 – Thanksgiving

1/21/12  Lupus and Benlysta after 21 weeks

1/30/12  Lupus post-infusion infection, steroids and the E.B. effect

2/6/12   Benlysta & Rituxan infusions for Lupus: the tortoise and the hare

2/17/12  Lupus and Benlysta – 25 Weeks and Infusion #8

2/29/12  Lupus, Benlysta infusions and almost glorious mornings

3/15/12  Lupus and postponing a Benlysta infusion

3/25/12 Lupus, singing and a visiting hummingbird

4/7/12   Lupus and Benlysta after 7 months – Infusion #9

4/27/12 Benlysta infusion #10 while pondering the good, the bad and the ugly of lupus

5/12/12 Diagnosis and Treatment of Lupus: Fact #12 – Lupus requires multiple medicines!

6/29/12 Lupus and Benlysta – after 10 months & infusion #12

7/26/12 Lupus and Benlysta – After 11 months and 12 infusions it is a milder, gentler monster

8/4/12   Lupus and Benlysta – One year rheumatologist check up with B+ Benlysta grade

8/21/12 Lupus and Benlysta Infusions – after one year

11/10/12 CNS Lupus and a little sneaky confusion

12/15/12 Benlysta infusion and forgetting something

2/9/13  Lupus and Benlysta Infusions – After 18 months

3/8/13 Lupus and my source of hope

3/14/13 Lupus teleconference on cognitive dysfunction and lupus brain fog – see discussion in comments re Benlysta

5/10/13 Lupus Fact & Blog of the Day No. 10 – Ten Minutes for World Lupus Day – see information in Lupus Fact section of post about costs for Benlysta treatment

6/8/13 Lupus,  Benlysta, and a little browsing with brunch

7/5/13 Lupus and breaking long-term Prednisone dependence

8/20/13 Optimizing Lupus treatment strategy #1 – estimating overall costs

9/1/13 We are still learning about Benlysta

10/11/13 Lupus adventures and blessings beneath a fiesta of balloons

10/25/13 Lupus Adventures – 2 kids, 2 years and 12 days

12/27/13 Lupus and waving the white flag of surrender

1/14/14 Benlysta Infusions for Lupus after two and a half years

1/20/14 Lupus and the first new rheumatologist appointment

2/21/14 A new lupus adventure in Benlysta infusions

3/5/14 Benlysta infusions for lupus at a fraction of the price

3/12/14 Getting good news of seemingly quiescent lupus

4/3/14 Lupus adventurer says goodbye to little canus lupus familiaris

4/15/14 Benlysta for Lupus after 33 months

5/23/14 Benlysta for Lupus, the first 1,000 days

5/29/14 Lupus and General Health Facebook Chat: Hospital for Special Surgery

7/16/14 Benlysta for Lupus without infusions?

5/16/15 Lupus Awareness Month, Manicures and Missing Toenails

6/18/15 Lupus and 200 Hours with Benlysta

4/16/16 Bring me a lupus infusion with epidurals on the side

5/15/16 Lupus and the recurring visit of the sloth

In summary:

  • Benlysta helps greatly moderate my lupus
  • Benlysta helped over time regain stamina as health became more stable
  • Flares are less frequent and much milder, and shorter in duration
  • Steroid dose sizes required to control flares have been almost eliminated altogether
  • Post-flare recoveries are more complete, returning more fully to pre-flare state of health
  • The pattern of escalating lupus severity after successive flares seems greatly reduced
  • My daily prednisone dropped from 10 to 7 mg daily, but attempts to drop below 7 mg have failed
Photo by Lupus Adventurer © 2013

Photo by Lupus Adventurer © 2013

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Comments on: "Benlysta Journal" (16)

  1. Mariane said:

    Hey, did you see my comment about how I managed to wipe out disease activity with food & juicing? I’ve been following you for awhile. My symptoms use to be really bad that I was disabled from work. I took Benlysta for over a year and it did nothing to help me. In fact I got worse, the worse year of my life since lupus diagnosis.

    But then I found the anti-inflammatory diet or IF factors & learned to control my symptoms through a system of avoiding foods that cause inflammation and increasing other foods that promote anti-inflammation. I also met with an MD that controls disease through food. With his help I lessened my use of processed foods, wheat, dairy, soy, genetically modified food & became even healthier. I lost 50 lbs and I’m now off ALL MY LUPUS DRUGS!! No Benlysta, steroids, plaquenil, methotrexate.. I’m off all of it!!
    Then I happened onto juicing though the movie Fat Sick & Nearly Dead. That wiped out all other health problems and I’m healthier now than I’ve been in 10 years. I share this because I care about you and would love to see you get better like me. Dec 2012 I walked only with a cane or walker. I started the IF FACTOR diet Jan 2013. By end of Jan 2013 I could walk without a cane & had no joint pain. By summer, all my symptoms were gone and I had no indication of disease activity in my labs. My new rheumy won’t even diagnose me with any disease because he has never seen me with symptoms or any indication of disease. It IS possible to rid your body of disease activity and get off all those toxic drugs. Let me know if I can help. I hate to see anyone else suffer like I did, putting my faith in a drug. I’m so glad I’ve figured out what was causing the disease and how to control it… AND it’s cheaper than Dr visits and drugs!

    • Mariane, thank you so much for sharing your story here in connection with Benlysta and your lupus treatment. It sounds like you are in an excellent remission, and this is always something to celebrate for a lupus patient.

      Although a healthy diet can be a part of our arsenal against the cruel attack of any autoimmune disease, I would caution my readers not to assume that the alternative diet approach that you have taken will give them the same results you achieved. We know that Lupus is a potentially fatal disease that is capable of attack on multiple systems and organs of the body, such as the kidneys, heart, lungs, brain, blood vessels and liver.

      Lupus is clearly known to unpredictably have periods of flare and remission, and the frequency, severity, scope and duration of flares are different from patient to patient, and from time to time can be very different in the same patient. Sometimes quick intervention with powerful drugs can limit or even prevent the extent and severity of lupus organ damage, and even prevent untimely death.

      The generally held medical opinion is that there is no cure for lupus, YET. However, the new biologic drugs have brought us exciting breakthroughs in the treatment of many disabling and life-threatening auto-immune conditions, including lupus. While Benlysta is the first new lupus drug to be approved by the FDA in over fifty years, we know it just doesn’t work for everyone.

      In my own treatment history over the past twenty-five years, I have taken plaquenil, sulindac, prednisone, methotrexate, azathioprine, rituximab and Benlysta to treat and control my lupus activity and symptoms. Each drug has its benefits and risks, and some were appropriate for various ways my lupus flared, but not for others.

      In my humble opinion, the only safe approach to treatment of lupus is in combination with the careful oversight and involvement of a qualified medical doctor, who can monitor the invisible destructive activity of lupus through proper lab and diagnostic tests. I think appropriate attention to diet that suits the nutritional needs of each specific lupus patient is always a great idea and is an important support to the proper control of the disease. But, I would caution my readers against making drastic changes to normal recommended nutritional guidelines without the careful involvement of your rheumatologist or other doctor.

      I am always amazed how our bodies have such a delicately balanced biochemistry and metabolism that is incredible in its design, even when it is slightly out of whack from something like lupus. My best wishes to you, and hopes for you to have a long and healthy remission. Thanks for chiming in to the conversation with your unique perspective. LA

  2. I just found your blog and was so thankful to find such great information about Benlysta. I start my first infusion on Friday and I am hoping this will be a good decision for me. Thanks for taking the time to document your journey! You are a blessing!

    • Mellie, thank you so much for visiting here, and especially for your kind words affirming that my purposes for Lupus Adventures are being realized. Best wishes as you start this new medication. I hope you will have the same kind of positive results many of us already on it have seen. LA

  3. And for the record, my name is Mary Jane, so I am both the “rocketcityjane” as well as Mary. Just saying!

  4. Lupus Adventurer! Yes, I do know someone with Lupus…MOI. I know Mr. Lupus quite well and have great respect for him. Sometimes he can stop my little world from spinning. Other times, he is the teacher that lives with me. Teaching me what’s important in life and what is pretty rubbish. I know now life is shorter than you think and to gather my loved ones and friends and GO while I can. In spite of all the lessons he has taught me, I sometimes forget to thank my heavenly Father for the health that I DO have left and for the slow but steady progress that Lupus researchers and pharmaceuticals have made.

  5. I love these blogs. Not only are they informative, it’s like talking to a friend who has been in your shoes! I have 4 more days to next infusion, thank goodness!

    • RCJ, thank you so much for visiting Lupus Adventures, and sharing your thoughtful responses to the posts offered here for readers like you. I am blessed when fellow lupus patients join into the conversation and share their thoughts and perspectives here, too. Welcome to the conversation! LA

  6. I have nominated you for the Versatile Blogger Award. Please link back to my page and follow the rules. http://tlohuis.wordpress.com/

    • RCJ, thank you so much for nominating me for this award. I will check out the process and follow up on your suggestions. There are a handful of blogs that may not already have been recognized that I would like to suggest for the Versatile Blogger Award. Again, thank you for this kind honor. LA

      • You can have as many as you are given or you are welcome to pass it on to someone else if you’d like. Just wanted to let you know that I acknowledged your blog and thought you were well deserving of this award. If you accept it, part of the rules are to pass it on to so many others. Whatever you choose to do with it is fine. I know they are a pain in the ass, but I do proudly accept each and every one, it just take me time. I have to make a list because it seems they all come in at once and I’m now up to 5 more I need to get posted. My son does them for me because I just can’t do it, but I don’t dare ask him to do more than 2 at a time, and he’s sick at the moment. Sometimes it takes me a month to get an award posted. There is no time limit. I look forward to following your awesome blog.
        Peace,
        Wild Thang 🙂

  7. Only the handful in my local support group. I had my 5th infusion yesterday. I am cautiously optimistic. Whenever I ask my rheumy questions about Benlysta, he just replies ” I don’t know the answer to your question. There is not enough info on Benlysta yet.” LA,, that is why your blogs are important to us! I appreciate you so much!

    • Mary: I am grateful that my experiences can be a help to you and others. I know that during my early days before and after diagnosis of my lupus, it was a very lonely, solitary experience. I am glad if I can make a small difference. LA

  8. God bless you for taking the time to write of your experiences. I am a retired nurse and I try to find as much info as possible on Benlysta. . Thank you,
    Jane

    • Jane: Thank you so much for your visit to my blog and taking time to share a comment. I am honored when health care professionals like you give their encouragement to my efforts. Kudos to you for doing research about Benlysta. Do you have a friend or know someone with Lupus? LA

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