[Shawn]

I’ve been on Relyrio for about 8 months (amongst multiple other meds in my “ALS cocktail therapy”). I took off-label SPB and TUDCA before starting. I have continued slow progression (-5 ALSFRS in 30 mos.) and no side effects.

My Relyrio “pro tips”:

> Use warmish water for better dissolution

> As 007 says “shaken not stirred” (I keep an empty water bottle handy for shaking) – much better and more consistent mixing

> Pour in glass and drink in two stages: 5 oz chug followed by 3 oz chaser with swirl to get all the yummy dregs

> One piece of Extra spearmint sugar free chewing gum after to knock out the bitter taste

> Optional: Give wife a big kiss and enjoy her look of digust as she gets a taste of the Relyrio remnants on your lips 😛

BTW it took about 3-4 months for me to “get used to” the taste — it went from truly awful to no big deal

[Shawn]

Getting married Aug 10 to the love of my life (in Europe nonetheless)! I was 4 mos post-dx when we started dating and told her on our 4th date after she asked about my port :-). My unflappable fiancee said “no day is promised. . .at least it’s not cancer” and we haven’t looked back since. I credit much of my very slow progression to her amazing love and support! #ALS #ALoveStory

[Shawn]

I was fairly recently diagnosed (12.20), limb onset mostly left non-dominant hand, and have been deemed a slow progressor by my docs at Penn and MGH. I credit at least some of the slow progression to my therapeutic plan.

I started Radacava in February 2021. I have not experienced any significant side effects, maybe some tingling in left leg initially but that was only present mid-infusion cycle and disappeared after first couple cycles.

My progression has remained slow. Modest loss of arm/hand strength and slight saliva and maybe speech. I notice I feel my best (less fatigued, crampy & twitchy) just past the end of my infusion cycle then decline somewhat until next round of infusions.

I had a port installed after successful first course. The procedure was uneventful (coordinated by my Penn Medicine ALS Team) with quick recovery. The port works great–my home infusion nurse comes to access me each Monday of my 2-week course and I self-infuse M-F and deaccess myself for a un-plumbed weekend.

The whole infusion thing seemed daunting before starting but is really no big deal at all once adjusted after 1-2 cycles. I highly recommend a port and home infusion. E-Z.

[Shawn]

This is my list of meds/supplements I worked out with my Mass General / Healy ALS Center Neurologist:

Magnesium / OTC / 250 mg / BID

Riluzole / Rx / 50 mg / BID

Edaravone / Rx / 60 mg infus / 10x Mnthly

Nuedexta / Rx / 10 mg / BID

TUDCA / OTC / 1000 mg / BID

Sodium Phenylbutyrate / Rx / 3000 mg / BID

Methylcobalamin / Rx / 2×25 mg IM Inj / BIW

Acetyl-l-carnitine / OTC / 1000 mg / TID

Curcumin / OTC / 90 mg / BID