Guest Blog on Despite Lupus: Benlysta Part Two: Three Years and Forever

Last year I wrote a guest blog piece for my friend Sara who writes the blog Despite Lupus about my challenges having lupus and the first part of my journey with new lupus medication called Benlysta. Benlysta Part 1: My journey to Benlysta I followed up this piece recently for her blog about my early days with Benlysta and how it has improved my life.

This piece took a lot for me to write.  Well actually I wrote it pretty quickly, but sat on it for about 10 months as this type of thing is difficult for me to share.  I will talk to anyone in person, whether I know them or not, who needs my help with lupus, but to put this out there for the whole world is a big step for me.  I love to talk to you all about wine, food and healthy living, but to share my health challenges like this on Good Better Best Food is typically not my style.  Most people who know me, don't even know I have lupus and unless you live in my house, you really don't know how sick I have been or how sick I still am some days.  But I do know is how scary it can be to have a new diagnosis like this for an invisible disease.and how you need to take a leap of faith to try a new medication that has not been on the market long.  If I can help someone who is where I was years ago, then I know that stepping out of my comfort zone and sharing this story is the right thing.

Wednesday, January 13, 2016

GUEST POST: Benlysta Part 2: Three Years and Forever

I am thrilled once again to feature friend, fellow lupus patient, and health blogger, Patty Richey here on Despite Lupus. About a year ago, Patty shared with us Part I of her experience with Benlysta, the first FDA-approved drug for lupus in more than 50 years (approved back in 2011).Today, she's sharing the second part of that story, and I can't thank her enough for opening up for the benefit of those considering or starting Benlysta! Without further ado, here's Part II of Patty's journey: 
Benlysta Part 2: Three Years and Forever by Guest Blogger Patty Richey, Good Better Best Food
The two most frequent questions I am asked when discussing my Benlysta infusions are “How long have you been doing that” and “How long will your treatment last?”  The answers are: Three years and forever.
I started Benlysta infusions on January 2, 2013--otherwise known as the day that I started to get some semblance of my life back.  Right before I started the treatments people would ask me if I was scared about trying something like this, especially a drug that had not been on the market very long.  Frankly, I was more scared to not try it. I was way more scared of having to live every day in the condition I was in when there was something that could potentially help. Do I hate needles, IVs and hospitals?  Yes, but I hate lupus more.  I went into this treatment with an open mind, an open heart and the hand to hold of Running Daddy and the Sweet Boy.
So how did this start? In the beginning you have three loading doses two weeks apart and I did those up at my doctor’s hospital in Baltimore.  I prepped for the first treatment with a high protein breakfast, Gatorade and a ride to the hospital from Running Daddy.  The first round went well with fantastic nurses in the infusion center and a couple of sticks to finally get the IV into my rolling veins.  When it was finished, and it took about 2-3 hours start to finish, I felt fine.  As we drove back to pick up the Sweet Boy from Dancing Granny’s house I felt a little hungry but I also felt good, good in a way that I could barely remember.  I went home to lie down later and then after that I was also good for two weeks until the next loading dose infusion.
Infusion two was a little more challenging.  Since I did so well with Infusion #1, I drove myself to the treatment.  When the treatment was finished, I went into the restroom and looked in the mirror, my chest was red, really red.  I went to the nurse in a mild panic.  I was not so much upset with what might be happening, I was worried that I would not be able to continue the treatments.  At the advice of Dr. B they gave me an additional bag of IV fluid and a Benadryl.  The rash started to disappear.  The nurses told me that if a patient is going to get a rash from any infusion, not just Benlysta, it is always after the second one.  They did determine that I would be able to try to continue the infusions but would do so with a pre-med of a Benadryl before each infusion. I would be able to soldier on.
I had the third loading dose without complication but with a ride from Running Daddy.  I could now have the infusions monthly and they were able to change my infusions to a Johns Hopkins center closer to my house.  I switched from having a morning infusion and then trying to go back to work in the afternoon to going into work in the morning and then getting a 1pm infusion appointment.  I am fine to drive home but then typically get into bed around 7:30 pm on infusion night and sleep through the night.  
While I know that everyone has different experiences with Benlysta, I can tell you after more than three years of being on this drug, I know it works for me.  My fatigue is less, my pain is less, my inflammation is better and I feel like I even have my personality back.  For so many years I felt like a shell of a person, up and about with not much left inside.  It was not depression. I was just a person who was put together with chewing gum and duct tape every day just trying to get through the hours until I could go to sleep again to escape the fatigue and the pain.
On are recent appointment with Dr. B  I mentioned to him “remember all those times I would come in the office and say that one day I hope I will walk in here and tell you that I am actually doing better—well today is that day.”  I am hardly cured but both Dr. B and I both agree that I am so much better than I was from 2009 to 2012.  It has taken me six years to get here, but this drug is helping me put my life back together again.
I have Benlysta infusions every four weeks and there is definitely a life cycle for its effectiveness.  I am in good shape for about 3 to 3 ½ weeks after each infusion and I then I start to feel the fatigue and pain coming on.  I also think I don’t look as great as I near the day for my “date with Ben.”
While I wish Benlysta was something that I could do for six weeks and be cured, it’s just not my reality.  So I need to embrace it for what it is and know that if it keeps working the way it does, that I will do this forever and just be at peace with it. This treatment has given me my life back and I am so blessed to have my family especially Running Daddy and the Sweet Boy. I am just so grateful for all of the scientists who help develop these type of treatments and Dr. B who is smart, kind and thoughtful in every sense of the word.  There is also a team of infusion nurses who help me every month.  They look out for me, take care of me and we totally make each other laugh.  These are the gifts that Benlysta has given me and in a way, lupus helped put some of these amazing people in my life.  
If you have any questions I can answer about lupus, autoimmune diseases or Benlysta, please feel free to leave them here or email me at   I will answer every one.
You can read more about Patty on her own blog, Good Better Best Food, where she talks about healthy eating made simple. What's the premise behind Good Better Best Food? - Each recipe starts as a healthy meal, which is Good. Add one element of organic, whole grain, or locally grown or garden grown, and you've made it Better. To make it Best, incorporate several elements of organic, whole grain, locally grown or garden grown. Healthy eating can be as easy as Good Better Best.

2016-Spreading Joy

It’s been a long time since I have written and that is not bringing me joy.  I think about writing all the time.  I am still cooking, still trying to live healthy, working hard and going my Best to live well with Lupus.  I know my writing brings me joy and when I hear from people that this blog helped them or that they love reading it, it brings me joy.  Unfortunately, in 2015 I didn’t take enough time to write even short blogs that would bring joy to myself and others.  So in 2016, I am going to try and change all that.
Good Better Best is all about trying to live the Best, healthiest life.  Doing the Best you can, in that moment, on that day.  Some days Good is all you can do, and that’s just fine.  In 2015, we had turkey burgers and dogs way too many nights, but at times, it was the Best I could do.
When I started to think about goals for 2016, I wanted it to be some really transformational.  Not just the spend less (yup need to do that), lose weight (almost at where I want to be), I wanted it to be something that could really change someone’s day, including my own.  At some point this fall, I was in the elevator at my day job and a woman got in that I had seen many times before.  She always looks great but this day she looked particularly nice.  So I said to her “your outfit is super cute today” and her face lit up.  On the next floor, her co-worker got on and complemented her same outfit.  I looked at the second woman and said “I just told her the same thing!”  There was so much pure joy in that elevator.  When I got off, I was glad I did that and realized that I probably had just made that lady’s day.  I decided that I would try to do something like that, some pure act of kindness every day if I could.  Spreading joy.
I realized that there is a similar segment on the Bobby Bones radio show that I listen to on the way to work in the morning.  It’s called Pimpin Joy. and it is exactly what I am talking about.  There is even a familiar elevator story on the web page and health challenges that are not exactly the same, but very close to the outlook I have living with a chronic, invisible illness. 
So in 2016, as I plan to be spreading (pimpin) joy, I need to also make sure I am focusing more on my own joy.  This year I didn’t write enough and I need to change that.  I also need to focus on taking more cooking classes.  Running Daddy is so supportive of my love of cooking and always gets me Sur la Table cooking classes for Christmas.  Last year I didn’t find the time to go to a class (or make time) so this year I am going to make sure that I go to at least two classes.  Spreading joy….to others and myself.
So you know that I will be spreading (pimpin) joy this year, leave me your goals for 2016 in the comment section.  You are more likely to keep your resolutions if you make them public. 

Let’s make 2016 the Best year yet!  
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