11/13/2025
A new journey begins. This is Egrifta (Tesamorelin), a drug approved by the FDA specifically for HIV patients with severe lipodystrophy (fat distribution on the stomach and neck as a side effect of long-term antivirals). For years, I’ve suffered with visceral belly fat as the direct side effect of HIV therapy. It’s not known entirely why the body redistributes fat cells from the limbs onto the torso of patients, but for older patients with hemophilia added on top of all the other complications, the visceral fat becomes cumbersome.
As of late, I’ve started a new drug in Jan 2024 to treat my HIV called Dovato. It’s the first FDA-approved antiviral to treat HIV with only two drugs and not the standard three (which is called the cocktail). When HAART (Highly Active Antiretroviral Therapy) was first introduced in 1996, which combined three antiviral drugs that created a barrier around T-cells to prevent HIV from replicating, the regimen was brutal. At one time in the late 90s, I was on 38 pills a day. I was a lab rat of sorts on this new wave of medication. I had every side effect known to man as doctors tried diligently to find the right cocktail (three pills working together to prevent HIV replication).
Some pills had to be refrigerated (Fortovase). Some had to be taken with grapefruit juice to activate in the body (saquinavir). I’ve seen it all. I’ve had full-body rashes, hives on my torso and privates, kidney stones, anemia, liver toxicity, severe diarrhea, blood clots in my urine, neutropenia, hair loss, stomach ulcers, jaundice, lymphadenopathy, fat wasting on my face, muscle atrophy, chronic fatigue, pulmonary inflammation, extended stays in the hospital, retinal infections, and severe migraines. All of this occurred in high school, mind you—while I was in class, surrounded by my peers and no one ever knew. I never divulged the hell I’ve gone through to make it to 46 years on this blue dot.
Once a week, I’d come home from school, and my mother would have my IV infusions ready of immunoglobulin therapy to boost my platelets and blood cells, as my levels were always critically low. These infusions would last 6–7 hours and take up an entire afternoon, evening, and into the night. Once a month, I’d have to be driven to my treatment center in Lexington, KY for tests and to do my immunotherapy there. Often times, right after school, and be home by midnight for school the next day. The trip was three hours just to get there from our small and rural Appalachian town in eastern Kentucky. No one ever knew. I kept this side of my life hidden, not out of shame, but from the lack of understanding and education from those around me.
I started HIV therapy when I was 16. Through side effects and hell on my body physically and mentally, my entire metabolic system has been damaged, which is the cause of my abdomen being abnormally larger than the rest of my body. Scientifically, it’s called “apple belly” and “buffalo hump” on the neck. Lovely terms to classify something, right?
I’m currently two infusions in to a new venture, to boost my metabolic systems and hormone levels, which will hopefully fight some of this visceral fat caused by decades of toxic treatments. I prayed to God, if it’s meant to be, provide a way. He did just that. This therapy was approved by my insurance at 100% coverage, and this is a very expensive regimen that I’m on. God showed up. Within just a few days of seeing my doctor, the meds arrived on my front doorstep—no payments, no issues, no delays. It’s not a long-term solution, but hopefully one that will provide some much-needed relief.
I’ve gained close to 20 lbs being on Dovato, another side effect of HIV therapy. This excess weight is causing severe pain in my already compromised ankles and right knee. I’ve actually had four instances in the past three months of a full-on hemophilia joint bleed in my right knee—something that shouldn’t be happening on the new Hemlibra clotting therapy. So the relief and hopes for the new Egrifta (Tesamorelin) are high in helping me manage some of this unwanted weight gain, and hopefully redirect this belly weight back onto my arms and legs where it should be. On the flip side, my HIV labs have been the best since I’ve been recording my data in 2004. My CD4 counts are the highest they’ve ever been, and my HIV remains undetected on Dovato.
I’ve tried to get my story out there to local churches and faith based orgs… just to share the miracles that God has performed in my life, but nothing ever bounces back. I mention it, and I get the typical “let’s get it rolling” comment… weeks later—silence. That part is disappointing. I know there’s folks out there struggling with chronic pain and rare genetic disorders, but for some odd reason, our story is never really appealing enough to be given the light of day. This is a personal thing I’ve struggled with for years. We always see changed life stories of overcoming addiction, financial burdens, reunited marriages, even beating cancer… but never chronic disease, invisible illness—especially hemophilia or HIV. Chronic disease affects far more people in congregations than one would think. It’s not for my glory… but His. All I want to do is demonstrate faith, perseverance and being alive despite being told I wouldn’t be. That’s a modern day miracle folks.
I’ll report back in a couple weeks of being on this new treatment to see how it’s doing.it
