It’s hard to believe six months have passed since I first shared my experience joining MyTrial at Brigham and Women’s Hospital. The innovative approach of Khurana Labs & The Harvard BioMarkers Study gave me hope then, and today, I’m excited to update you on my second trip to Boston and the beginning of my treatment journey.

After extensive testing and analysis of my May results, the research team initially identified a promising experimental therapy that dampens down the Immune System as the primary treatment option. However, with FDA approval pending until early 2025, they proposed starting with Exenatide in the interim. While not originally developed for MSA, this diabetes medication has shown promising potential in early studies for slowing disease progression through its neuroprotective properties.
The beauty of participating in MyTrial versus a traditional clinical trial is the absence of placebos – every participant receives actual treatment. Given how precious time is with MSA, this was a crucial factor in my decision. The disappointing results from traditional MSA clinical trials also pushed me toward this more innovative approach.

I started Exenatide on November 20th, taking 10mg shots twice daily at home. After one week, I’m experiencing some side effects:
• Nausea and stomach discomfort
• Headaches and a sensation I can best describe as a “heavy head”
• Mental fogginess
• Reduced appetite (expected, as Exenatide is a GLP-1)

It’s too early to assess effectiveness, but I’m committed to sharing weekly updates, both positive and negative. The research team’s transparency about potential challenges while maintaining optimism about the treatment’s possibilities has been reassuring.

Looking ahead, I’m particularly hopeful about transitioning to the promising experimental therapy once it becomes available. Its development at the Ann Romney Center for Neurological Diseases, right where MyTrial is based, gives me confidence in the team’s intimate understanding of the treatment. Their recent success with MS patients using this nasal spray therapy suggests promising possibilities for those of us with MSA.

To my fellow MSA warriors and your dedicated support teams: I know how challenging this journey can be. While I’m just one week into treatment, I’m grateful to be part of a program that’s pushing boundaries and exploring fresh approaches to combat this disease. I’ll continue sharing my experience, hoping it provides valuable insights for others considering similar paths.

In Summary: The Choice to Begin w/ Exenatide before the promising experimental therapy.

These experimental treatments have recently garnered attention for their potential in combating MSA. With the latter likely not available for MSA Patients until January or February of 2025, the choice was made to start with Exenatide while we wait.

What is Exenatide?
Exenatide (Brand name Byetta) is a glucagon-like peptide-1 (GLP-1) receptor agonist initially developed for managing type 2 diabetes around 2005. Unlike other GLP-1’s, it has the benefit of penetrating the Blood Brain Barrier. It has Emerging research highlights, in its neuroprotective properties, sparking interest in its application for neurodegenerative diseases like MSA.

Exenatide in MyTrial for MSA
MyTrial is investigating Exenatide’s potential to slow MSA progression. Delivered as a twice daily injection, the drug is being evaluated for its effects on motor symptoms and disease trajectory. Early results have shown promise, but larger, well-structured studies are needed to confirm these findings.
Early Findings
Preliminary data suggest that Exenatide may:
• Improve motor symptoms.
• Potentially slow overall disease progression.
However, these outcomes remain tentative, as extensive research is required to validate these benefits.
Important Considerations
Exenatide is not yet approved for treating MSA. Common side effects include:
• Nausea
• Vomiting
• Diarrhea

What about this promising “experimental” therapy?
It is a nasal spray developed at the Ann Romney Center for Neurological Diseases, designed initially for treating Multiple Sclerosis (MS). It works by targeting neuro inflammation and modulating the immune response through T-cell activation suppression.

It’s Potential for MSA
Given the shared inflammatory pathways between MS and MSA, researchers believe this drug could also benefit MSA patients. Initial findings in MS trials have shown reduced symptoms and improved quality of life, encouraging further exploration for MSA.

Early Results from Exenatide in MyTrial
In the first week of using Exenatide I’ve seen, manageable side effects, such as:
• Nausea
• Headaches
• Stomach discomfort
• Appetite suppression (linked to GLP-1 activity)
These outcomes are being monitored closely as the study progresses.

Innovative Research Approaches: MyTrial vs. Traditional Trials
MyTrial Overview
Unlike traditional placebo-controlled trials, MyTrial ensures all participants receive active treatment. This innovative approach accelerates data collection and provides quicker insights—vital for conditions like MSA, where time is of the essence.
Advantages
• Eliminates the placebo phase, ensuring active treatment for all participants.
• Accelerates evaluation of therapeutic effects.

Challenges in Traditional Trials
Conventional trials for MSA have struggled to produce statistically significant results due to the disease’s rarity and complexity. Innovative models like MyTrial offer a new paradigm for advancing research.

Hope for MSA Patients
The development of these experimental drugs offer a beacon of hope. While still in experimental stages, these treatments have the potential to improve lives and redefine possibilities for MSA patients.

The Role of Research in Advancing Treatment
Participation in research studies is crucial for progress. Collaborative efforts between researchers, patients, and caregivers are pivotal in driving breakthroughs.

Looking Ahead
It is my hope that regular updates on my use of Exenatide and beyond will provide valuable insights into the drugs effectiveness. Transparency and engagement within the MSA community remain essential as research unfolds.

Conclusion
While it is too soon to declare success, the progress with these experimental drugs signal a promising future for MSA treatment. By staying informed and supporting innovative research, the MSA community can collectively contribute to groundbreaking advancements and improved outcomes.

#FuckMSA 🙏❤️

~Coach~