Lupus Nephritis

Last week I slept more than I have in years. Part of me enjoyed the sleep, because I have diagnosed insomnia and the other part of me was frustrated. The problem was that despite taking naps multiple times “last week” I still was sleeping 9-10 every night. Thankfully I work in the evenings, but this also cut time for me doing school work and other fun activities. The only thing I can think of was that this is either my reaction to Benlysta which in the past only lasted a day OR the fact that I had leakage with last weeks injection. It also made me think, was I always this tired prior to Benlysta and now Bed-lysta is allowing me to sleep? My insomnia is related to my kidneys/lupus, but I honestly don’t know.

Nevertheless, today is my rest day, because I took Benlysta last night. This morning I woke up way early and I didn’t even nap yesterday. I’ll probably take a nap today though. I slept maybe 6 hours? So far, knock on wood, this is the first time after an injection I am not feeling nauseated, overly sleepy, and don’t have a headache. There’s of course many hours left in the day so time will tell.
Side note: My blood pressure is no longer MY normal, but textbook normal; I also lost 1 pound.
Happy Friday all!
#Lupus #LupusNephritis

Long ago, many years ago, I was told by a nurse I should document my journey. I took her half seriously, but did create journal entries back when LiveJournal was a thing. This is my story, so I can remember my Benlysta journey.

The morning after my first injection I woke up feeling off and almost sick, but not viral-type sick. The only thing I can think to describe it as is when people told me about their Covid vaccines immune responses. Mild and tolerable. (Personally my Covid vaccine immune responses was extreme). I sipped on my iced coffee (my normal routine), but as the morning went on I had very little energy and felt very nauseated. I tried to sip on cold water and it helped a little. I got to the point of almost vomiting, but thankfully, I had anti-nausea medication.
I’m not sure what time it was at this point, medication worked, but I was 0% hungry and very fatigued (sleepy). I actually have diagnosed medically induced insomnia, so I can only assume the sleepiness is from the Benlysta. I laid in bed, had the only thing I could think of that I had a taste for (mashed potatoes and gravy) and then took a 2 hour nap; I let myself sleep until I woke up.
I never nap, despite my normal Lupus fatigue, so honestly it was nice waking up refreshed. When I woke up, maybe around 4PM, I just relaxed more, really had no energy other than to sit on the couch. My husband made me another bowl of mashed and I continued to drink water. We played some old Atari games and a board game. Around 11PM I actually became hungry and ate a snack.
Today I woke up feeling different, I felt like I slept, like I could walk, and have no feeling of being “sick”. I’m actually making soup for my family shortly and feel energetic at least compared to my norm.
I’m hoping with each injection there is less day 1 nausea/fatigue, but even if not, I’ll take those symptoms just to feel like I am now. I feel like my eyes are fully open for the first time and not sluggish. Was it the nap my body had to take or is it the medication working? Tomorrow we will see. #Lupus #LupusNephritis #SystemicLupusErythematosus

*This is not medical advice, but simply my story*

I recently changed my rheumatologist, because I kept seeing my numbers going in the wrong direction, had increased symptoms, and yet the result notes always said “normal/stable”. Always advocate for yourself. I am now on Benlysta and this is my story.

As a medical professional and a lupus patient of many years it really started to bother me; the not being listened too by my specialist. I had a traumatic teen-hood after being diagnosed with lupus at 14/15 and then at 19 my kidneys completed failed while I was at work. To put it in perspective, I was rushed to the ER and my sweatpants and underwear were cut off of me—that’s how much fluid retention I had gained in a few days, 112lbs to 185lbs. I was told I was near death and both of my kidneys had failed, I was at about 5% function. This lead me to having to drop out of college and end up dialysis for about 9 months. I was placed on new medication, and by the power in whatever god you believe in I was given a second chnace at life.
Life has never been the same since and many of my teen-hood lupus friends had passed. I had very little warning and this is how my lupus has always been. One day “fine” and the next day absolutely not fine.
When I saw my numbers climb over the last year, having trouble contacting my doctor, and having this gut feeling that doom was coming I knew I had to switch providers. Despite living where I live, there are very few rheumatologists that specialize in lupus and somehow I got lucky and found one that not only specializes, but researches it, and teaches it to other providers. Upon my first visit with her she Immediately she asked me how can she help me and my concerns. Those who are wondering, back pain, fatigue, increased raynauds symptoms along with labs trending in the wrong direction. At the time I was dealing with a terrible case of costo as well. She asked me what I took for pain and told her nearly nothing because of my kidney history and she was shocked I didn’t have a taper on hand or was offered anything that actually works for this kind of pain. She really seemed like she cared; it was a nice change. We also talked research and Benlysta was brought up for the very first time to me. I knew about it, but was never educated on it as a patient nor ever offered it. Long story short, I got a load of blood work done, had a follow-up about a month later, and then was medically approved for Benlysta. I’m still shocked how much she cares for me (and I’m sure all her other patients).
The one thing I really want to stress is that Benlysta is a specialty medication ($$$) and prior authorizations take time. I was approved about a month ago, but since my insurance changed with the new year I then needed a new prior authorization. In the process of waiting for pharmacy to deliver, those who qualify, Benlysta has a great copay program, along with a care program that will deliver a sharps bin and a carrying case. They also have a video online with how to inject along with another package that helps people who need a little extra help. This brings me to one other important point; not all insurance covers self auto injections (pens), so also keep in mind there is an infusion option. Benlysta may not be right for everyone, but it doesn’t hurt to talk to your provider.

The real reason I am writing all this is because today I was finally able to give myself my medication, a medication specifically designed and approved for my medical condition. It really feels surreal.
I took my medication from the fridge (a little over 30 minutes prior to injection), took a shower, checked all my vitals (totally unnecessary), and then self injected following the protocols. Yes it stung, but for seconds. If this can improve my pain, fatigue, and numbers then I will forever be grateful to live my life again.
I can now call myself lucky for a second time and dreaming of a life without fatigue and chronic pain; being able to walk through forest preserves again, running, and simply waking up rested.

I hope others find the care they deserve.

To be continued…
#Lupus #LupusNephritis #SystemicLupusErythematosus