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Anyone else have the same response?

June 27
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MyLupusTeam

What is it like to feel awful after a Saphnelo infusion — exhausted, weak, and headachy for days — and does this happen to others too?

First, those feelings are very real and very valid. Infusion reactions are a known response, and fatigue, headache, and weakness are all recognized side effects that can follow an infusion Show Full Answer

What is it like to feel awful after a Saphnelo infusion — exhausted, weak, and headachy for days — and does this happen to others too?

First, those feelings are very real and very valid. Infusion reactions are a known response, and fatigue, headache, and weakness are all recognized side effects that can follow an infusion. Other MyLupusTeam members have shared similar experiences. Some described being wiped out for days after infusions, feeling weak and exhausted each time. Others noted that while the side effects were tough, they were still seeing positive results — like better skin, joint improvements, and more good days overall.

A few members switched from infusions to self-injections hoping for fewer side effects, with mixed results. Since this has been going on for over a year, it's really worth bringing up with your doctor. They can:

- Review whether the severity of your reaction is expected
- Prescribe medications beforehand to help reduce infusion reactions
- Discuss whether switching to a different delivery method might help
- Weigh the benefits against how much it's affecting your quality of life

Nobody should have to lose 3-4 days every infusion cycle without their doctor knowing just how much it's impacting them. You deserve that conversation! 💙

June 27

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