GUEST POST: Benlysta Part 1: My journey to Benlysta

Benlysta Part 1: My journey to Benlysta, by Guest Blogger Patty Richey

I am thrilled to have friend, fellow lupus patient and health blogger, Patty Richey, here to tell us about her experience with Benlysta. Most of you are familiar with Benlysta - the first FDA-approved drug for lupus in over 50 years. It's improved the lives of many lupus patients, and I think Patty would put herself in that category. I'm so happy that she's agreed to share her story!

You can read more about Patty on her own blog, Good Better Best Food, where she talks about healthy eating made simple. Her premise is great - 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.

In today's post, she's putting aside her healthy, meal-planning hat to talk about her journey with lupus, and how she came to be on Benlysta. She'll cover her treatment and results in Part II, so stay tuned. You haven't heard that last from Patty!

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Sara and I have been friends for about four years, and we met via email right after my diagnosis. It turned out that she lived in the next neighborhood over from me - sometimes your angel can live right next door.  Our children now go to the same school, so we are now Mom friends and real friends along with being Lupus friends.

A while back, Sara asked me to write a guest blog spot on my experience with Benlysta, and when someone helps you put your life back together in those very dark days, you just have to say yes.

While this is a departure from my regular blog, www.GoodBetterBestFood.blogspot.com , I felt that this was important to share for those struggling with Lupus and those that love someone with Lupus.
When thinking about this blog post on Benlysta, I really thought it was best to break it up into two parts.  To just write about my experience since starting Benlysta on January 2, 2013 would not really give readers the clear picture of my health situation that got me to this point.  No one should enter into infusions of this kind lightly or as a first line of treatment in my opinion.

So where do I begin?  I have never really been all that healthy, a cold would turn into bronchitis.  I would take Echinacea and whatever virus I would have would only get worse.  Things really changed with my health the minute I became pregnant with my son, aka the Sweet Boy, in the fall of 2005.  I had bad morning sickness, which was really all day sickness.  I was dizzy a lot and had extreme fatigue, but heck, I was pregnant. Wasn’t I supposed to be tired?  Apparently not like this.  What I now think was happening was that I had bad morning sickness on top of Lupus flares.
The Sweet Boy was born in August 2006 and the extreme fatigue continued, but I ignored it.  I was a working mom with a demanding job…but does that mean I needed to nap for over two hours on the weekend and wake up unrefreshed?  I soldiered on.

In 2008, I helped with a store opening for the company I worked for, I had walking pneumonia at the time but I would not let myself stop as there was a big event to be done.  That year also I worked both political conventions back to back for my corporate job.  I had done four conventions prior to this so I was used to the non-stop work for months leading up to the events and the twenty hour days the week of the actual presidential conventions.  After it was over, I could not seem to catch up on my rest.  I thought, this time is different, I am older, and I am not some young kid anymore who can recover in a weekend. I soldiered on.

One Saturday in March 2009, I woke up with a big lump in my right cheek that hurt a lot and I had a fever of 103.  When I could not get my fever to go down by the next day I went to the emergency room where they diagnosed me with an infected parotid gland (main salivary gland) and said that if I had waited any longer to go to the emergency room it could have been deadly.

That week I saw a so called Top Doctor ENT (ear, nose and throat specialist) who said she really didn’t know what caused this and didn’t seem too interested in helping me.  I knew I was sick, really sick and this time I could not soldier on.  I still felt like a truck had backed over me two weeks after the trip to the emergency room and just knew there was something really wrong with me.  One Thursday afternoon I got on the Johns Hopkins website and located an ENT at the main hospital in Baltimore that was also a parotid gland specialist.  I called Dr. Derek Bohene’s office and I had an appointment the next Tuesday.

Dr. Bohene and his intern walked into the room that Tuesday morning and the intern said “Do you think she has Sjogren’s disease?”  Dr. Bohene replied “Maybe, but I need to make sure it isn’t a tumor”.  Well, it wasn’t a tumor, but it was looking like Sjogren’s.  With Sjogren’s disease, your immune system starts to attack anything in your system that makes moisture.  In addition, fifty percent of people who have Sjogen’s either have lupus or rheumatoid arthritis.

That summer I was able to get one of the first appointments in the new Sjogren’s clinic at Johns Hopkins.  It’s run by Dr. Alan Baer who is the head of rheumatology.  After reviewing my blood work, family history and other symptoms, Dr. Baer determined that I had Lupus/Sjogren’s undifferentiated, which basically means that I have characteristics of both diseases but don’t fit neatly into either box.   Many people with autoimmune diseases don’t fit neatly into a medical diagnosis box.  That’s what makes these diagnoses so difficult.  My favorite saying is “You’ve seen one case of lupus…you’ve seen one case of lupus.”

Over the next couple of years Dr. Baer and I would try a lot of different things together, Plaquenil and Evoxac, I went gluten free, but I was never really better.  I mean I was a little better, but I still had crushing fatigue, joint pain and there were far too many times when I would just run out of energy and not be able to walk.  Frankly I don’t even know what a flare is because in over nine years, I never had a symptom free day to compare it to.

In November 2011, I had an appointment with Dr. Baer and he told me about a clinical trial that he was running for a Sjogren’s drug. I told him at that point I was willing to try anything, even if it meant weekly injections with something that could end up being a placebo.  I was beyond ready.

It took one full year to begin the screening process for the clinical trial.  During this time, I was getting worse.  I had done both political conventions again…back to back and really struggling through the fall.  The day I showed up for my screening exams for the trial, I was a total mess and trying not to be.  So guess what…I flunked out of the trial.  Now, Dr. Baer will say I didn’t flunk out, but basically, that day I was exhibiting too many lupus symptoms and therefore I was excluded as a candidate for the clinical trial.

I went on a lunch break and little did I know while I was eating my hospital cafeteria salad, Dr. Baer was in his office reading my file from the last 3 ½ years.  When I came back from lunch he was waiting for me, and I could tell the news was not what I wanted to hear.  While he did tell me that I was no longer a candidate for the study, he thought there was enough in my file to make the case to the insurance companies for Benlysta which was approved by the FDA in 2010 and the first lupus drug of its kind in over 50 years.

That day I gave Dr. Baer permission to send a letter to the insurance company asking for coverage for Benlysta infusions, which can run about $25,000-30,000 per year.  Within 10 days, we had approval.

I think it is important to understand how I got to the point of Benlysta infusions.  It is not something I embarked upon lightly or quickly.  Dr. Bear is a very cautious and thoughtful man and he does not push pills or new treatments.

In part 2, I will cover my actual treatments and results.  Stay tuned.  If you have any questions please either email me at pcrichey@yahoo.com or leave a comment here.  I will answer all of them.

Comments

Carmen Metodiev said…
Read your posting via Despite Lupus and I can't wait for part 2... When will it be coming out? I am a newbie to Benlysta and am learning and wanting to learn new things. Thank you for sharing ��
Nicole said…
Hi Patty!

I also have undifferentiated Sjogren's, possibly with future RA in the mix, and dysautonomia as some of my most difficult symptoms. Thank you for sharing your experience. I am on the lookout for possible treatments for the future, particularly to stop nerve damage. So I appreciate hearing about the considerations that went into your choice. I am amazed, too, that you have been able to keep your corporate job. I am currently working on my MA in teaching. Now that my POTS is getting worse, though, I do not know that teaching will work for my body in the long term. It is a difficult decision to navigate. As you know, autoimmunity is nothing if not unpredictable.
Patty Richey said…
Hi. I am working on part two. I have an infusion this week so I will make notes on all of my rituals and routine. The one helpful thing is that I have a desk job. I cannot be on my feet for long periods of time.
Anonymous said…
I finished cytoxan in the summer and I am starting benlysta soon. Could you say anything about how you felt after the infusion (the day of and the few days following). After cytoxan I was very nauseous and had to stay in bed for days. I understand that everyone's experiences are different! Right now I have no one else to ask.
Thanks,
Leela
Patty said…
Hi Leela, It's Patty that wrote the guest spot. Everyone is different. I am ok a few hours after the infusion and can drive home. I get a 1pm infusion and by about 7:30 pm I am ready to head to bed. I will sleep soundly until my alarm goes off the next morning. Sometimes I have a dull headache after for about a day. I have been very lucky and have done well from the first treatment. Please feel free email me directly if you would like at pcrichey@yahoo.com
Anonymous said…
I have been on Benlysta for about 3 mos and have not noticed a lot of difference except a little less fatigue. How long does it take to show improvement? Thanks, Pam
Unknown said…
I am on high doses of cellcept aND plaqunil and want to see if I could be a canidate for benlysta.... I'm so tired of the crazy amount of steriods they have me on and each time they try to tapper me down flares hard core
Sjj88 said…
I am on high doses of cellcept aND plaqunil and want to see if I could be a canidate for benlysta.... I'm so tired of the crazy amount of steriods they have me on and each time they try to tapper me down flares hard core
Hi. Sorry it took me a little bit to answer, I had a brain freeze on my account password for my Google site. :)

1) I think I was lucky and frankly felt better after the first loading dose. I have continued to do well over the last almost three years on Benlysta. But when I am due for an infusion, I really feel it all over the week before. From what I have learned on other Benlysta sites is that everyone is different. For some people it takes several treatments. But I do know it works for me. When I think about where I was at this point three years ago (which was in really bad shape) and where I am today I am so grateful to have Benlysta in my life. I pray that it would work for everyone but if it doesn't we need those big brained people to come up with more options for us.

2) To Sjj88: I am not on cellcept but I am on Plaquenil. I cannot say if you would be a candidate for Benlysta. The best advice I have for you is to talk to your doctor about it. I understand the frustrations about the steroids and I truly try to not take them unless I really have to.

Feel free to keep in touch and I wish everyone Good health!
Patty
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