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Table 10 Quotes relating to the treatment of chronic symptoms

From: Patient and caregiver experiences of living with acute hepatic porphyria in the UK: a mixed-methods study

Quote (identifier)

“I’ve been on morphine now for nearly three and a half years because I have constant pain from attacks.” (Patient C)

“She’d be using a TENS [transcutaneous electrical nerve stimulation] machine and they medicated her with almost ever-increasing doses of morphine, pregabalin, […] tramadol, both quick-release and slow-release. […] She had sublinguals, if it was really bad, she’d have morphine.” (Caregiver B)

“[I] don’t use pain relief during the day because I don’t want to be in that state of being knocked out. Not knocked out but […] I mean not ‘with it’ […] Drowsy in front of my children.” (Patient H)