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Rilozole experience?
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My wife’s diagnosing neurologist prescribed rilozole immediately after diagnosis, 1 Tab 2X per day. On her first dose there was immediate dizziness, fatigue and facial numbness which required laying down. All those effects wore off about an hour later but repeated after each dose. Over the next several days, mucous seemed to increase and to become more ropey which aggravated swallowing and coughing and subsequent reduced oral nutrition and hydrating liquid intake. At the initial ALS Clinic consult about a week later, the attending neurologist there discontinued the rilozole and put her on atropine sulfate drops to counter the ropey mucous. This was successful and we are now awaiting suction/cough assist/APAP equipment.
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My dad takes 2 rilozole tablets per day. He is on an AVAP and has PEG. Within past week wakes up very foggy and short of breath. Feels like he may not be expelling enough CO2. He now reduced his rilozole to one per day and ALS team making adjustments on AVAP machine. Any suggestions as to how to expel the CO2 more proficiently? Could the rilozole contribute to the fogginess? Any tips we may be missing? He was diagnosed in June 2020. Thank you.
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George – – it’s good that you are getting advice from your dad’s doctor and ALS clinic team. Adjusting medication levels without their input is shooting in the dark. Personally, I doubt his breathing issues and fogginess issues are related to Riluzole and more likely the AVAP machine settings.
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