I was just diagnosed. In office, dr said he would get the approval for the Xyrem for me-best drug for my situation. Then he called back saying I couldn't get it due to the opioid pain med (fentanyl). Is this a hard and fast rule? Or is it a case by case type of thing- based more on how a patient metabolizes meds and/or actually reacts to meds? Because I do not want to suffer anymore! I have lost my entire life for 6 yrs now, due to narcolepsy(cause unknown til now), and a hip tumor and possible auto-immune cancer. I would really like to regain as much of my life back as I possibly can... My lung function isn't compromised, my heart is healthy,and beyond the obvious narcolepsy-I am NOT otherwise sedated or "dopey". I have been on the pain med for 6 yrs and at this point my vitals are no different on them than before I started (reluctantly) taking them. Can anyone offer any insight?
Fentanyl is a CNS depressant and there is a black box warning that warns of taking Xyrem with any other CNS depressants. They are contraindicated because of the risk of respiratory depression. 2 subjects died during trials of this medication due to mixing with other CNS depressants and 2 other subjects came close just from the Xyrem itself causing respiratory depression. One was a young healthy 39 y/o female who received a therapeutic dose and an hour later developed respiratory depression that was treated with oxygen, then it happened a second time the same night, an hour later, she also vomited and had fecal incontinence another man needed intubation but he had already had a bit of respiratory illness previously. Black box is the most serious warning a drug can get other than being pulled from the market. So yes, this is a hard and fast rule-no other CNS dpressant drugs can be taken with Xyrem including alcohol. You will need to choose either the Fentanyl or the Xyrem or treat the narc/cat with another drug. It is probably not worth the risk. I hope you find something that helps but I'm thinking the Xyrem is not going to be the drug for you! :(
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