I have been effectively sidelined after experiencing a new side effect. Vertigo is not something I was expecting after having had 4 infusions. I had slight dizziness after #2 but nothing like what I am going through now. Nausea, fatigue and headaches have been the main issues with me, but I had been pushing through them. That's what I'm supposed to do, right?
Anyway, after being sent home from the office a week ago, I have only been back one afternoon just to work on time sheets. I have been staying in touch by phone and email and trying to get over feeling guilty for not being there. Guilt is one of those things that I have a very hard time shedding. That and a feeling that I need to convince people that I am sick, because I just look tired.
So here's the scoreboard on how I'm doing since starting Benlysta -
Lupus symptoms as of today
Joint pain - No! - Seems resolved/virtually gone
Chest pain/shortness of breath - none!
Fatigue - Yes - sometimes more ~ sometimes less
Headaches - Yes - almost daily - could be attributed to Benlysta
Facial rash - Yes - as prominent as I can ever remember - harder to hide with make up
Hair loss - Hmmm - less fall out, but still sparse on crown - no regrowth yet
Mouth ulcers - No! not for a while
Sun sensitivity - Of course! that will never change
Benlysta side effects
Vertigo/dizzines - Yes - daily since May 28th
Nausea - Yes - daily
Fatigue/weakness - Yes, but is it lupus or Benlysta?
Insomnia - sometimes which contributes to fatigue
Depression - maybe
Other side effects which can be attributed to meds given to deal with Benlysta side effects
(Ativan, Meclizine, Zofran, Decadron)
(Ativan, Meclizine, Zofran, Decadron)
Drowsiness - Boy howdy!
Slowed Cognition - foggy headed, word finding issues - very disconcerting
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Due to scheduling problems at my doctor's office, I will not be receiving infusion #5 until Thursday the 7th. It is now about the magic 3 month mark since I started Benlysta. Doctor would like me to stay on it for at least 6 months to get a real sense for whether it's working for me. I have to start weighing the benefits vs. the side effects, though. Especially if I am too dizzy, nauseous and fatigued to work. Definitely bears some serious contemplation...