Being diagnosed with any progressive disease is shocking and overwhelming. You first need time to process the information. What will this new reality entail? How will it change your life? How much pain will you be in? The confusion and sense of helplessness can be heightened when the condition is a rare illness that’s seldom ever heard — if at all heard about — by people who have never been affected by it. Such is the case with hATTR amyloidosis. What exactly is it? How do you treat it? And, what can you expect from treatment?
What is hATTR Amyloidosis?
Hereditary ATTR (hATTR) amyloidosis is a rare progressive disease caused by a mutation in the transthyretin (TRR) gene. As a result, the TRR protein — which is made by the liver — is created with misfolds and accumulates as amyloid fibrils — peptides and proteins — on the nerves, digestive system, and/or the heart. When there’s an amyloid fibrils buildup, patients experience debilitating symptoms, which include:
- Weakness of the limbs
- Pain in the limbs
- Loss of sensation
- Swollen legs
- Chest pain
- Excessive sweating
- Shortness of breath
- Constipation or diarrhea
- Heart-related issues
- Recurrent urinary tract infections (UTIs)
- Carpal tunnel syndrome
- Unintentional weight loss
- Sexual dysfunction
- Blurry vision
- Floaters in the eye
- Kidney disfunction
Symptoms can vary from one person to another. They usually appear in adults between the ages of mid-20s to mid-60s, and they become more severe over time — disrupting everyday life and making it difficult to work.
ONPATTRO® Infusion Therapy for hATTR Amyloidosis
hATTR Amyloidosis can be treated with infusion medication ONPATTRO®. The drug works by decreasing the number of TTR proteins made in the liver — which in turn reduces the number of amyloid deposits. As a result, you experience fewer symptoms.
ONPATTRO® therapy also results in improved nerve function, which leads to more strength in your limbs. Additional benefits include being able to maintain a healthy weight, less pain, and a decrease in the frequency of urinary tract infections.
Side Effects of ONPATTRO® Infusion Therapy for hATTR Amyloidosis
As with any prescription medication, ONPATTRO® has a risk of side effects. The most common ones include nasal congestion, sinus infections, respiratory infections, and infusion-related reactions — such as infection at the site where the IV is inserted, or the IV becoming dislodged from your arm. The best way to minimize these side effects is to have an experienced healthcare professional monitoring the infusion therapy through its entire duration. At Infusion Associates, you will always have a physician or nurse making sure your therapy goes smoothly.
ONPATTRO® lowers the amount of vitamin A in your blood. Therefore, you will likely have to take vitamin A supplements once you start treatment.
What to Expect from Infusion Therapy for hATTR Amyloidosis
When you first visit one of our facilities a nurse will sit down with you to discuss all the details of your treatment. This includes the duration of each therapy, dosage, and possible side effects. This is also a good time for you to ask questions and address concerns.
From the moment you walk in, you’ll notice it’s a comfortable and welcoming environment — a far cry from a sterile hospital — where you’ll receive treatment while resting on a cozy reclining chair. You’ll also be provided with amenities of your choice — including blankets, television, WiFi, and warm beverages, such as coffee, tea, or hot chocolate. If you’d prefer to bring your own snacks and drinks, you are welcome to do so.
If Your Doctor Has Recommended Infusion Therapy, Let Infusion Associates Help You
At Infusion Associates, we provide medically-prescribed infusion therapy for patients with chronic conditions in a welcoming and friendly environment. Our team of healthcare professionals is committed to making the experience as comfortable as possible. We always inform patients of any potential side effects and answer all their questions before starting treatment. In addition, we have a Registered Pharmacist on staff to make the process as seamless as possible.