Hi everyone hope this finds you well. Ok so this post is titled the day after , but it is actually 2 days after as I could not blog from being a total train wreck yesterday. However, this blog will describe the day after infusion #2.
Wow what a huge hit I took! I woke up yesterday and thought I had been run over, no seriously runover. Unlike my first infusion where I was able to have some ginger ale and codeine to move around a little that was not gonna happen.
It is already such a blur so I will try to describe it best I can. Since most of the readers have lupus you should understand very well what I am trying to describe. Ok here goes…
I was so exhausted and in so much pain I was taking codeine every 3 instead of 4 hours. Yes my doctor approved it as my liver panel was fine and it did not exceed the maximum 3000 mgs of Tylenol in a day for emergency dose as there is only 325 mgs of Tylenol in a codeine #4.
I could barely lift my head off my pillow and had tremors. The kind that are more like jerky movements and not the shakes. So as you can imagine it made it very hard to walk when I could get up so I used my cane for stability to go to the bathroom, get drink, etc.
Then the headache kicked in, OMG the kind where you are pretty sure you may not even be a human being and some sort of alien living in a hallucinogenic bubble. That I’m fairly sure was caused by the dehydration due to lack of access to fluids because I couldn’t walk to the kitchen. My face was hard and purple and hurt like hell.
Then I started running a fever at around 12 o’clock, but it stayed right under the call the doctor if this happens on the discharge sheet at around 101.8. So I was hot, then cold, hot, shaking, sweating. All this mixed in with the other stuff mentioned above. Fever is a very common side effect to Benlysta and it makes sense. I am allergic to all NSAIDS so it is hard for me to get a fever down.
Lastly I was nauseous as expected, but my stomach is the one thing left on my body that is still strong. If I could have gotten up to get a cheeseburger I would have eaten the whole thing hahaha! Which is good because I was told that you are to feed, not starve this particular medication. Unfortunately though I starved it because nobody was home to help me eat. So I started to turn around at around 10 o’clock last night when the fever broke. I was able to sit up in a chair and the headache was much better I also had some heaviness in the chest and symptoms similar to pleurisy.
So here’s the deal…to anyone reading this without lupus you would think, wow what an idiot for taking this drug. Who would do that to themselves? However, everything I have described above is what is called a bad lupus flare. We get this several times a year sometimes lasting for weeks to months with no relief. In this case it was temporary and served a purpose. In most cases it does not and you just don’t know in true detail because I don’t talk about it except on support sites.
So to my fellow lupies…the best way to describe what happened to me yesterday is to imagine your worst flare EVER. The kind that sends you to the emergency room because you don’t know whats wrong and are assuming your organs are failing. Except you don’t go because you actually know what’s wrong, it’s your body fighting the bad cells, the ones that aren’t behaving like the other’s. It’s the Benlysta doing it’s job. So don’t be scared it’s nothing unlike what you have been dealing with for so many years already. Just be prepared with someone home in case, but you may not need anyone. My first one I didn’t feel that great but was able to take care of myself. Better to be safe then sorry and have someone nearby. These symptoms I am describing were not in waves they were collective, all at once.
So today I woke up feeling pretty good. I just feel like I have lupus and not that I was hit by a train and left to die. I have been putting arnica gel on the IV site this time to try to avoid that awful embarrassing bruise that everyone stared at me like I was a frigging junkie. So far it’s working well, yay
I want to reiterate that this blog is about my experience with Benlysta and you may not have any symptoms at all, yours may be worse or they may be completely different. This is a blog about my experience and you can take from it what you need as you decide whether or not to take this route. For me it was an easy decision. Nothing to lose, but time. There are only so many years you want to spend in a bed and I was/am DONE with that. Feel free to comment directly on the blog if you wish, especially the readers on Benlysta. Also any questions for me I will surely answer if I can. It is absolutely amazing to see the amount of hits this blog is getting as it shows me the “traffic” and obviously this is a subject people want and need to know about! So I will keep going with the blog and since I don’t go back for another infusion for 28 days I may include some research information on the drug in the interim.
Ok so now I am going to go take a hot shower and make something to eat. I want to thank everyone who have been so supportive of this journey and I hope I am helping those of you curious about what may or may not happen while taking this drug. I am including pictures of the walls of my room at the hospital. The oncology unit has amazing theme rooms and the artist is so talented! This room was an Africa wildlife theme. She donated her time and free-handed every room, what a lovely and talented lady!
Love and Lupie Hugs,