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Table 8 Quotes relating to the challenges of long-term prophylactic heme arginate (off-label) treatment

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

Quote (identifier)
“I am unable to work full-time because I have to have at least one day off for my hospital haem arginate and the maintenance. It’s very, very difficult to plan anything long term, like […] holidays, family holidays, wedding attendance […] [travelling to meet with the consultant] is very tiring in itself and costly. Financially, it’s put a strain, obviously going from a full-time position to part-time.” (Patient B)
“Yes, I still do [the haem arginate infusions] every two weeks. It’s a brilliant drug, but it’s really hard to get into the body. So, I’ve had surgeries to have the port line in place, I’m on my sixth line now in six years, and each line is supposed to last ten to twenty years. It’s because the haem arginate is, it crystallises in the line, so it only lasts about a year. So, I’ve had multiple surgeries, multiple hospital stays. The last surgery I was told will probably be the last line they can fit, because I lost a lot of blood during the operation. So, in terms of the haem arginate, I’m on a time limit essentially […] I’m running out of options now. Which is frightening” (Patient E)