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WF10 Treatment Report

Category: Others

See patients taking WF10

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2 patient evaluations for WF10 taken for the purpose of 'ALS (Amyotrophic Lateral Sclerosis)' with a perceived effectiveness rating of Slight Slight Slight Slight Slight

HappyPhysicist

Sex: M

Data Quality: 2 stars

ALS: 3 yrs

Bulbar: moderate

Arms: mild

Chest: mild

Legs: moderate
by HappyPhysicist
See HappyPhysicist's full WF10 history

**Purpose:** ALS (Amyotrophic Lateral Sclerosis) *(Started Jan 19, 2012)*
Date	Dosage	Perceived effectiveness	Side Effects	Adherence	Burden
Feb 20, 2012	40 mL Daily	Slight	None	Always	A little
Feb 20, 2011		Slight	None	Always	A little

0 helpful marks

stillstrong4783

Sex: F

Data Quality: 0 stars

ALS: 3 yrs

Bi-Pap

Bulbar: moderate

Arms: none

Chest: none

Legs: none
by stillstrong4783
See stillstrong4783's full WF10 history

**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).
Cost: $200+ monthly

3 helpful marks