How GLP-1 agonist medications changed one PHriend’s life

Note: This column describes one woman’s experiences with GLP-1 agonist medications. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy.

Living with pulmonary hypertension (PH) is a daily challenge that can strip away independence, mobility, and confidence. But for one “PHriend” (a friend with PH), the journey took a dramatic turn thanks to an unexpected tool: GLP-1 agonists, initially designed to help lower blood sugar levels in people with type 2 diabetes and promote weight loss.

Given the current widespread interest in these medications, many within the PH community may be wondering about their potential benefits. So when I saw my PHriend Lynda Pinto, a Pulmonary Hypertension News Forums member, post about how a GLP-1 agonist has helped her, I wanted to learn more.

Lynda was willing to share more about her experience, so I interviewed her via email, with excerpts of our conversation included below. She shared that the medications helped her to not only lose weight, but also to regain some control over her life with PH.

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Lynda’s experience

LP: I first heard about GLP-1 injections from friends who were using them to lose weight. Curious, I brought it up with my pulmonologist. To my surprise, he agreed it could be a smart option. Since I couldn’t exercise due to my PH limitations, he and my primary care doctor referred me to a weight loss specialist.

I started on Ozempic (semaglutide), but after four months and only a 5-pound loss, it was clear I needed something more effective. That’s when I switched to Mounjaro (tirzepatide) and things began to change. With Mounjaro, the weight started coming off steadily. My dose gradually increased each month. To date, I’ve lost around 45 pounds.

Lynda Pinto recently traveled to St. John, in the U.S. Virgin Islands, and San Juan, Puerto Rico. (Courtesy of Lynda Pinto)

But the biggest surprise? The impact on my heart health and PH symptoms.

A year ago, I could barely walk without portable oxygen. I had right heart failure, and I was forbidden from doing even light activity. After the weight loss, my echocardiogram showed normal right heart function. I was cleared to start walking again, and I did. Now, I walk [one to two] miles daily without oxygen. I can go to the gym. I can travel. It’s been a total transformation.

Like many others on GLP-1 [medications], I’ve experienced some digestive side effects — mostly constipation, which I manage with over-the-counter aids. Occasionally, I’ve felt nausea, but nothing severe.

The biggest challenge has been cost. Insurance won’t cover my medication, so I use a trusted compounding pharmacy, paying $451 monthly. It’s not sustainable long-term, and unfortunately, other [weight-loss] medicines like phentermine are not safe for PH patients. So I’m working with my doctor to explore alternatives.

Tips for PH patients considering GLP-1 medications

If you’re living with PH and considering GLP-1 agonist medications, Lynda shared the following tips:

• Work with a specialist who understands your condition and can refer you to a legitimate pharmacy.
• Beware of “cheap” online providers; some cut corners and dilute the medication.
• Look for pharmacies that do third-party testing to ensure quality.

The best part? “The freedom,” Lynda said. “I recently celebrated my 60th birthday on a Mediterranean cruise, walking [five to six] miles a day during tours, something I couldn’t have imagined a year earlier. I didn’t need oxygen. I didn’t hold anyone back. I felt like myself again.”

GLP-1 agonist medications may not be for everyone, but they’ve been life-changing for Lynda. It’s not just about the weight loss, she said; it’s about reclaiming her life after PH tried to take it away.

Always consult your PH specialist and medical team before making any changes to your treatment plan. 

Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary hypertension.