January 22, 2016

Benlysta Update

An update on my Benlysta journey, largely because I'm not seeing blog posts about side effects more recent than 2012. People are still taking this med so I will share my experiences so far.

After 3 infusions in 4 weeks my benefits are:
  • Reduced fatigue(!!!!!!!)
  • Reduced tissue inflammation
  • Reduced skin irritation (eyes too--contacts every day!)
  • Reduced joint pain

Side effects:
  • Insomnia*
  • GI upset (worse after infusion)
  • Nausea
  • Dizziness
  • Feeling wobbly or shaky (not new but worse)
  • Headache
  • Increased urination
  • Restless leg
  • Fever (mild, only after the first infusion)
  • Ear pain
  • Craving for carbs
  • Olfactory hallucinations
Some of these side effects, like restless leg and headache, only appear in the evening. I have no idea, circadian rhythms and antibodies I guess? I don't have a PhD thus haven't tried to research it.

Caveat: The improvements after the first 2 infusions wore off before the third infusion. So I'm back to sausage toes and cranky eyes. But I have faith that the improvements will last longer as I stay on the med. I really hope they do, because infusion #4 isn't for a month.

*Insomnia thankfully has eased. I'm still taking 25mg Trazodone to stay asleep all night but my ability to fall asleep is back to normal. This was the side effect that could have driven me to stop Benlysta so I am very very very glad.


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