Nusinersen (SPINRAZA) For Spinal Muscular Atrophy (SMA) - (LOW Dose Regimen)		version 5/7/2026		

Nursing Orders 	

	
	Interval	Defer Until	Duration	
	☐	Nursing communication	Every visit	S	Until discont'd	
		Notify physician if headache is serve and not resolved with bed rest and Acetaminophen.		
	☐	Nursing communication	Every visit	S	Until discont'd	
		IR nurse to call the central pharmacy at 713-411-5364 after the patient has arrived and provide the location for delivery of Spinraza.		
	☐	Nursing communication	Every visit	S	Until discont'd	
		Allow the Spinraza to warm to room temperature as it will have been stored in a refrigerated state prior to delivery.		
	☐	Nursing communication	Every visit	S	Until discont'd	
		Notify: Jason Thonhoff, MD to pick up the CSF sample at 713-363-8258 (office) or 832-367-5608 (cell).		
	☐	Nursing communication	Every visit	S	Until discont'd	
		Patient to be monitored in the recovery area for 2-3 hours after which they can be discharged home. If complications arise, please contact the neuromuscular staff at 713-363-7310 (office) or cell numbers listed on protocol.		

PRN Medications 	

	
	Interval	Defer Until	Duration	
	☐	acetaminophen (TYLENOL) tablet 500 mg	PRN	S	Until discont'd	
		500 mg, oral, every 6 hours PRN, headaches, Starting when released, Until Discontinued
	Maximum of 4 grams of acetaminophen per day from all sources. (Cirrhosis patients maximum: 2 grams per day from all sources).		

Intrathecal Injections 	

	
	Interval	Defer Until	Duration	
	☐	IR Lumbar Puncture by Radiology	Every 14 days	S	3 treatments	
		Normal		
	☐	nusinersen (PF) (SPINRAZA) intrathecal solution (RESTRICTED) 12 mg	Every 14 days	S	3 treatments	
		12 mg, intrathecal, once, Starting when released
	Administer every 14 days for 3 doses.
	Monitor for post-lumbar puncture syndrome. Headache is one of the most common complications post-lumbar puncture procedure, and usually resolves within 24 hours.		
	☐	IR Lumbar Puncture by Radiology	Once	S+58	1 treatment	
		Normal
	Single 12 mg dose to be administered 30 days after the third dose.		
	☐	nusinersen (PF) (SPINRAZA) intrathecal solution (RESTRICTED) 12 mg	Once	S+58	1 treatment	
		12 mg, intrathecal, once, Starting when released
	Single 12 mg dose to be administered 30 days after the third dose. 
	Monitor for post-lumbar puncture syndrome. Headache is one of the most common complications post-lumbar puncture procedure, and usually resolves within 24 hours.		

Intrathecal Injection - Low Dose Maintenance 	

	
	Interval	Defer Until	Duration	
	☐	IR Lumbar Puncture by Radiology	Every 120 days	S+178	 treatments	
		Normal
	Maintenance dose to begin 4 months after last loading dose		
	☐	nusinersen (PF) (SPINRAZA) intrathecal solution (RESTRICTED) 12 mg	Every 120 days	S+178	 treatments	
		12 mg, intrathecal, once, Starting when released
	Maintenance dose to begin 4 months after last loading dose
	Monitor for post-lumbar puncture syndrome. Headache is one of the most common complications post-lumbar puncture procedure, and usually resolves within 24 hours.		

Labs 	

	
	Interval	Defer Until	Duration	
	☐	CBC Hemogram	Every visit	S	Until discont'd	
		STAT, Normal, Clinic Collect		
	☐	Prothrombin time with INR	Every visit	S	Until discont'd	
		STAT, Normal, Clinic Collect		
	☐	Partial thromboplastin time, activated	Every visit	S	Until discont'd	
		STAT, Normal, Clinic Collect		
	☐	Protein, urine, random	Every visit	S	Until discont'd	
		Routine, Normal, Clinic Collect