WF10 is a solution of OXO-K993 containing stabilized chlorite ions. The solution focuses on supporting the immune system by targeting the macrophage, a type of white blood cell that coordinates much of the immune system to regulate normal immune function.
Purpose:ALS (Amyotrophic Lateral Sclerosis)(Started Feb 16, 2012)
Date
Dosage
Perceived effectiveness
Side Effects
Adherence
Burden
Feb 21, 2012
Major
Mild
Always
Somewhat
Date
Feb 21, 2012
Advice & Tips
DOSAGE & ADMINISTRATION: Infused 40 ml WF10 per day for 4 consecutive days. It was diluted in 400 ml 0.9% saline IV Bag and flushed with saline to ensure 100% usage. This is 0.5 mg/kg per day, thought to be equivalent to 2 mg/kg sodium chlorite and same amount of active ingredient as high dose NP001. Infusion times were varied from 2.5 hours to 1.5 hours. Began 17 weeks from last NP001 infusion.
BENEFITS:
Hands uncurled mostly and have become more "flexible" and dexterous, beginning day 1.
Walking has improved significantly. Balance, gait speed and foot lift improved and were noticed by several others on 3rd day, without me commenting. Continued improvement on day 3 thru 6. Was highly dependent on cane, now again am confident without.
Speech has improved, to where some words and phrases are understandable again.
Swallowing better.
Cough far more productive from day 2.
Elimination of minor day drooling, and even while sleeping.
SIDE EFFECTS:
No site pain was experienced, even when using same catheter on consecutive days.
Similar to my experience with the NP001 phase 2 trial, I got drowsy with each infusion, with mild dizziness. This was similar to my first infusion week with NP001, building on consecutive days and lasting over 24 hours for the last infusion. It may have been worse than for NP001. Slept most of day following last infusion.
As with NP001, fasciculations increased in intensity and frequency immediately.
Monitored BP and heart rate. No issues.
Purpose:ALS (Amyotrophic Lateral Sclerosis)(Started Dec 15, 2011)
Date
Dosage
Perceived effectiveness
Side Effects
Adherence
Burden
Feb 01, 2012
26 mL
Daily
Slight
Mild
Always
A little
Jan 25, 2012
30 mL
Daily
?Can't tell
Moderate
Always
Not at all
Dec 22, 2011
30 mL
Daily
Slight
Mild
Always
A little
Date
Feb 01, 2012
Advice & Tips
Completed Infusion cycle #3 on Jan 27, 2012 (3 days of infusion) at 0.5mL/kg (reduced due to declining weight over past few months). Avoided antioxidants this round but am sad to say that did not experience much benefit thus far from the infusion--while I do feel that my saliva/drooling is significantly less during the infusion, this improvement is short lived and already gone back to normal. My grip strength has continued to decline in my weaker extremity (19.6 kg in right hand, and 11.1 kg in left hand). I have no improvements in ability to swallow foods or with my speech (and I have no intelligible speech any more, now this way for >6 months). I had minimal side effects with this infusion, mainly fasciculations in left hand, lips and tongue. I noticed mild fatigue with the infusion and for a day afterwards as well.
Cost
$200+ monthly
Date
Jan 25, 2012
Advice & Tips
Completed infusion cycle #2 on Jan 11,2012 (3 days infusion this time). Did not remember to stop my Vitamin C/D/E and took these on days of the infusions. Experienced profound constipation for 1-2 days after completing infusions and do not understand why; have not been prone to this in past. Do not have as much appetite during infusions so perhaps drank/ate less than normal. I felt no improvement from this cycle: no less numbness in mouth/lips/tongue and no change in left arm and left leg strength as I experienced with cycle #1, perhaps because I took antioxidants during my infusions this cycle. Side Effect#2: was very fatigued and had prominent fasiculations in lips and left arm after completing the cycle that were short lived (anywhere from a couple of minutes to >30 mins long) and resolved on their own. No infusion burning this time. Note to all potential WF-10 patients: Do not take antioxidants with the infusions of this drug! I know this has been written about before but slipped my mind. Starting 3rd cycle of infusions today (after 14 day rest period as about to travel). Will know if the antioxidants truly blunted the impact after observing my response this next cycle. Grip Strength with dynamometer: 19.6 kg on rt (nml) and 12.9 kg (left)
Cost
$200+ monthly
Date
Dec 22, 2011
Advice & Tips
Completed infusion #1 of WF 10 at 0.5mL/kg dose x5 days and plan for next infusion in 3 weeks. Experienced some fasiculations following the infusions and burning at the infusion site during infusion day #2 and 3 that improved when my IV site was changed. Grip strength for both hands before and after treatment have not significantly changed though symptomatically my left hand (my weakest extremity) felt much stronger for at least 1 week after the infusion. Also, I have bulbar onset ALS and thus have the greatest dysfunction in speach, swallowing, drooling, etc --after completing 5 days of this first infusion, my mouth/lips felt significantly less "numb" and my tongue strength seemed stronger. No change in speech. My bulbar improvements (in sensation) have been maintained over the past few weeks. Grip Strength 18.5 kg (rt hand-nml) and 12.4 kg (left hand-weaker than nml).
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