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: 
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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 goodbetterbestfood@gmail.com.   I will answer every one.
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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.

4 comments:

Leanna said...

I have been getting Benlysta almost exactly as long as Patty and it's great. I have been at no more than 5mg daily of Prednisone for more than two years that has never happened to me before and I have had since I was 11 and I am 38. I have not had any side effects. I always drive myself to the infusion.

Anonymous said...

Thank you Sara for having such a great guest on your blog, and thank you Patty for this follow-up post! I can't tell you how amazing it is to read about another person's experience before/after starting a new treatment like Benlysta. I myself have not yet been prescribed it, but I can relate so much to your descriptions of the impact your disease has had on you - your physical symptoms, the loss of your personality, feeling like a shell of yourself, feeling like you're put together with duct tape and chewing gum. It is amazing to hear that, even though you're far from cured, there's such a difference between the way you felt before and they way you feel now that you're on this medication. Thank you for giving me hope that, with the right treatment, someday I might look back and realize that I'm doing so much better, and have my life back. Thank you again for sharing.
-Katherine

Good Better Best Food said...

Thank you for your kind words. These two pieces were actually pretty hard for me to share. I will talk to anyone who needs my help about lupus and Benlysta but putting it out there was just so hard for me. Taking this step and sharing my story so broadly makes me know that I did the right thing if it can help people.

Whether someone with lupus is a candidate for Benlysta or not, the one thing Benlysta can do for all of us is give us hope. Hope that it may work for you or if not then hope that it will lead to new drugs that could help. One new drug in fifty years is just not acceptable.

-Patty

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