A new drug and more Botox

You may recall that in the Fall of 2022, I was urging my friends and family to contact the FDA to approve a promising new drug to slow down the progression of ALS. At the time the drug was known as AMX0035. After being approved in late 2022, it soon became available by prescription under the name Relyvrio.

At the time, I was taking a supplement, TUDCA, that is a key component of this new drug but it was causing me digestive distress issues. So when I could finally get access to Relyvrio I opted against using it since the most common side effects include diarrhea, abdominal pain, nausea, and upper respiratory tract infection. And while it didn’t factor into my initial decision, the medication is dispensed as a powder that is mixed with water and is reported to taste absolutely terrible. ALS support groups are full of folks swapping tips on how to make it tolerable.

After having my colostomy and switching to my g-tube for feeding in December, I spoke with my Synapticure neurologist about starting Relyvrio since I can now bypass the worst effects by taking the medication via my g-tube (rather than orally), and the digestive distress concern is no longer anxiety-provoking with my colostomy bag in place.

Insurance approved the new drug for my use in February, and I took my first dose yesterday. For all of you who contacted the FDA to approve this drug, many thanks. You made a significant difference. While the drug is not a cure, it is intended to help slow down the progression.

More botox

You may also recall from previous updates that I’ve received Botox injections in my left arm to allow my left hand to become less rigid. That treatment has been very successful, so last week I received my first Botox injections in my legs to help with spasticity and to help reduce the uncomfortable nighttime spasms associated with this disease. Botox works by blocking certain nerve signals that control muscle activity and can be used to treat uncontrolled muscle contractions and to relax chronically contracted muscles. It should take about two weeks to feel the potential benefit of the Botox in my legs.

In-home xray

We also continue to be surprised by the number of services available for in-home care. My podiatrist (who also does house calls!) was concerned about a minor injury to my toe that had been slow to heal and ordered an x-ray which was done by Aloha Pacific Mobile Imaging right in our living room! When you consider how much work is involved, and how much of my limited energy is expended, in getting me out of our home and to medical appointments in my power wheelchair, this is a big deal.

My disease progression

Regarding my progression, ALS is now impacting my voice. I have experience a significant deterioration of the quality of my voice, including the ability to speak loud enough for others to hear me. Thanks to Fammy, I have a new voice amplifier that I’ll start using to help people better understand me.

Speaking also zaps a lot of energy from me, and I have to speak slowly to find the right sounds to make to the words I want to express. Being a broadcaster for so many years, my voice became my “logo” and it has been a significant blow to me not being able to use the voice that people have known all these years.

Amazon Wish List

Jen has just finished updating our #TeamJosé wish list on Amazon to include various supplies needed for my care and comfort.

As always, thank you for reading my blog and for your continued love and support.