Week of Lemtrada Infusion, Overview

Daily Pre-Meds

    Taken Twice daily: #1 prior to departure to outpatient clinic & 2nd dose in evening:

    Claritin 5mg (or Benadryl 25mg if you want something sedative)
    Zantac 300mg
    Acyclovir 200mg

    All are available OTC except Acyclovir. You will need to take this for 1 month beginning the first day of       infusion. Plan to have this filled in the US prior to your international departure.

*For a detailed, day by day look at what we experienced during Lemtrada infusion look under the April Tab for Day 1-Day 5 for Lemtrada infusion.

Daily Infusion Protocol 

    1gm Solumedrol over I hour * see below for more info on steroid options
    1gm Tylenol oral
    12mg Lemtrada over 4 hours
    Saline solution to flush IV tubing and 1 hour monitoring period

   This protocol is the same for all days with one exception. 
   You have 3 (possibly more) choices on Solumedrol dose on day 4 & 5. You can choose:
   No steroids- this is the official protocol
   Continue with 1gm on both days
   500mg on Thursday, 250mg on Friday

   Any of these options can be followed by an oral or IM (intra-muscular) taper
   Ava chose option 2
   Emma chose options 3 with 100mg IM on Saturday
 
  Your personal neurologist both domestic and international may have recommendations or requirements on your particular steroid infusion protocol.

Side Effects

      Headache- Monday- both Ava & Emma had mild headaches. Emmas was a bit worse (5 on scale of 1-10).Treatment with Motrin 800mg was successful. No other headaches were experienced by either patient.

     Fatigue/Drowsiness- Emma slept most of Tuesday. Ava slept most of Wednesday. Emma would have liked to sleep Thursday but we had a lot of visitors that day making this impossible. Friday was our best day with minimal fatigue or drowsiness.

     Hypo-Hyper-Tension- Wednesday through Friday. Ava experienced hypotension successfully treated with a saline bolus. She was not keen to drink much water and might have been dehydrated. Emma experienced Hypertension that was non responsive to an increase in her Prinivil dose. She did drink copious amounts of water. Dr. Ziemssen let us know both were known to happen and as we were not symptomatic with the changes in BP he was not concerned. Emma's BP returned to normal upon her first BP check at home.

     Lower Leg Pitting Edema- Wednesday-Friday- Emma only.This was quite severe with 4+ pitting. Even with tension hose (3 pair at once!) the swelling did not reduce much. This was Emma's presenting MS symptom at diagnosis and is likely a side effect unique to this patient. Emma also experiences LL edema with any steroid infusion, summer heat, high humidity and during periods of stress.

     Mild Constipation- toward the end of the week. Likely related to steroids. Miralax was used in country with mild effectiveness. Resolved within 3-5 days of returning home.

Side Effects We Did Not Experience

     Rash- most notability- we both expected a rash, but it never materialized. We were told it was most likely to occur on days 1-3 and during the infusion (not once we were back at the hotel). This never materialized. We did not even experience any itchiness.

    Bronchospasm/Asthma- Although the clinic was ready with Albuterol inhalers with our names on them- we never experienced any breathing problems during or after treatment.

     Nausea
     Fever/chills
     Insomnia

Please email me if you have any specific questions regarding this protocol or concern about side effects.