Hi again.
Looks like I've made it through another day/night. Yesterday got to be pretty rough for a while. Muscle aches, joints hurt and are swollen, low-grade fever, cough, headache, constant thirst, and a bad taste that lingered in my mouth. A few peers in my Benlysta Buddies Facebook group assured me that they, too, had that weird metallic taste. Most said it would go away in a few days. (Good!)
I'm still weak and sleepy so I will probably keep this one short. One thing that still bothers me more than the above mentioned 'issues' is the fact that my neuropaathy is flared again. UHG! Hands and feet are very hot, red and burning. This stinks because it is so hard to get them comfortable. But... if that is the worst thing I have to go through to fight this ugly Lupus, then I'll take it all.
The thing is that most of what I'm experiencing after my first infusion (so far) are things that I experience usually everyday. One difference is the weird taste in my mouth. Another is that under MY norm, my peripheral neuropathy is more under control. That is something I need to get used to - at least for now. Perhaps it will pass.
Ok, I'm going to rest for a while. I'm getting sleepy again. Thanks for reading. I'll update again very soon.
Til next time,
K.
Thursday, March 15, 2012
Wednesday, March 14, 2012
Benlysta - First Infusion
Yesterday was my first infusion of Benlysta. I wanted to try to document my journey with this ground-breaking new medication for Lupus. If you aren't familiar with it, it is first Medication approved for Lupus in over 50 years! If successful (meaning I have no major issues with side effects), my quality of life may be improved significantly within a few months!!! I'm very excited at this prospect!
When I arrived at the my rheumatologists office, I checked in and was taken back to a room specifically for injections, infusions, and the like. I wasn't nervious because of my excitement! I am a member of a couple of support groups on Facebook that have offered tremendous advice and encouragement. Benlysta Buddies and Mothers with Lupus are filled with caring, compassionate people and these folks made my first infusion an easy one.
The nurse that administers the infusion, Amy, had asked me to have taken two Benedryl tablets in addition to two Tylenol before coming to the office. This was to help with any potential allergic reaction and the risk of a minimal pain from the IV. I waited patiently as Amy prepared my dosage in the IV bag. I felt very little discomfort as she stuck my arm (I am blessed to have a large vein in my left arm!). Several vials of blood was drawn through a port in the tubing before the infusion of Benlysta began.
Amy said I should let her know if I felt anything odd. After about 10 minutes, my heart seemed to be fluttering so Amy slowed the drip down somewhat. That helped my heart. Then a few minutes after that, I had a weird metalic taste in my mouth and seemingly on my tongue. She again slowed the drip and the rest of my infusion went without incident. I survived my first infusion!!
My dear sister-in-law, Alyce, was kind enough to take me and even was allowed to sit in the room with me. After she took me home, I was very sleepy and tired. (Benedryl maybe?) I slept for several hours, got up to eat a sandwich and drink some water. At that time, I began to feel as if I had loose junk in my chest. Coughing helped and I was able to go back to sleep. A couple of hours later I woke up again. My peripheral neuropathy was flared and it was very irritating. I took my prescribed dosage of Neurontin (given to me by my neurologist) and the burning eased off in less than an hour.
I later went back to bed and slep about 6 more hours. I had to use the restroom or I would probably be asleep still. I wanted to write this before I laid back down to rest. I'm still exhausted and have a tinge of a headache, but nothing rest shouldn't take care of.
Thanks for reading. I hope this will help someone else on their Benlysta journey. I'll try to write as often as I am able.
Have a wonderful day!!!
Karen
When I arrived at the my rheumatologists office, I checked in and was taken back to a room specifically for injections, infusions, and the like. I wasn't nervious because of my excitement! I am a member of a couple of support groups on Facebook that have offered tremendous advice and encouragement. Benlysta Buddies and Mothers with Lupus are filled with caring, compassionate people and these folks made my first infusion an easy one.
The nurse that administers the infusion, Amy, had asked me to have taken two Benedryl tablets in addition to two Tylenol before coming to the office. This was to help with any potential allergic reaction and the risk of a minimal pain from the IV. I waited patiently as Amy prepared my dosage in the IV bag. I felt very little discomfort as she stuck my arm (I am blessed to have a large vein in my left arm!). Several vials of blood was drawn through a port in the tubing before the infusion of Benlysta began.
Amy said I should let her know if I felt anything odd. After about 10 minutes, my heart seemed to be fluttering so Amy slowed the drip down somewhat. That helped my heart. Then a few minutes after that, I had a weird metalic taste in my mouth and seemingly on my tongue. She again slowed the drip and the rest of my infusion went without incident. I survived my first infusion!!
My dear sister-in-law, Alyce, was kind enough to take me and even was allowed to sit in the room with me. After she took me home, I was very sleepy and tired. (Benedryl maybe?) I slept for several hours, got up to eat a sandwich and drink some water. At that time, I began to feel as if I had loose junk in my chest. Coughing helped and I was able to go back to sleep. A couple of hours later I woke up again. My peripheral neuropathy was flared and it was very irritating. I took my prescribed dosage of Neurontin (given to me by my neurologist) and the burning eased off in less than an hour.
I later went back to bed and slep about 6 more hours. I had to use the restroom or I would probably be asleep still. I wanted to write this before I laid back down to rest. I'm still exhausted and have a tinge of a headache, but nothing rest shouldn't take care of.
Thanks for reading. I hope this will help someone else on their Benlysta journey. I'll try to write as often as I am able.
Have a wonderful day!!!
Karen
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