When you have pulmonary hypertension (PH) or pulmonary arterial hypertension (PAH), living with a condition that requires regular infusion medication can be a challenge. This is especially true when pain or discomfort at the infusion site is a common side effect. But don’t let that stop you from getting the treatment you need. By using these six tips to ease infusion site pain, you can learn how to take charge of your treatment and make your well-being a priority.
People with PH or PAH may be treated with infused prostaglandin drugs as part of their management plan. These drugs are administered subcutaneously (under the skin) or intravenously (into your vein). One downside of having drugs administered this way is that you may experience pain or irritation at the site of the injection or infusion.
This discomfort is a common reason people give for discontinuing treatment. When it comes to managing PH or PAH, effective treatment is vital, but it’s also essential to manage discomfort. Read on to see what myPHteam members are saying about their experiences and to learn some tips for managing this pain.
An intravenous catheter is placed permanently into a vein as a central venous catheter, peripherally inserted central catheter (PICC) line, or a central line to access the heart directly for vascular support. The line is connected to an infusion pump for continuous infusion.
Subcutaneous catheters are not inserted permanently but, rather, placed semipermanently, removed, and then reinserted at recommended intervals.
The following drugs are infused to treat PH or PAH:
Continue reading to learn about strategies to help minimize pain at infusion sites for PH or PAH medication.
The place on your body where your doctor infuses the medication can affect the level of pain you feel at the infusion site. According to a review article, it’s usually best practice to start infusions around the stomach area, because it is easy to monitor your reaction and apply topical remedies to ease the pain if needed.
Avoid areas where your skin is more sensitive. This includes places where you have stretch marks, scar tissue, bruises, skin folds, and skin that is directly under the waistband of your clothing.
One member of myPHteam wrote of their experience with subcutaneous treprostinil: “My infusion sites on my left side do not hurt as long as the sites on my right side do. Does anyone know why this might be?” Another shared, “I find if I put the infusion on my right buttock, it doesn’t hurt that bad.”
In general, though, you might not want to change the infusion site too often. Once you find a site that works relatively well for you, sticking with it rather than cycling through many infusion sites can help improve tolerability.
While the wrong infusion site can certainly increase your pain levels, if your site is working for you, research from The Journal of Heart and Lung Transplantation suggests that you may want to keep it longer than previously recommended. Instead of changing the infusion site every 72 hours, there is some evidence that it may be effective to keep the infusion at the same site for up to four weeks or longer.
If you and your doctor decide to go this route, you will still need to make sure the infusion site is staying sterile. The medication, syringe, and tubing should still be changed every 72 hours, even if the infusion site itself is not changed.
A myPHteam member wrote, “I changed my infusion site last Saturday and have had the usual pain from that. Usually, by the 10th day, it’s a lot better.”
Icing the infusion site is a common first-line treatment for reducing localized (limited to a specific area of the body) pain.
Using an ice pack can be a good healing technique, especially if you notice your skin bruising. Mayo Clinic recommends wrapping the ice pack in a thin towel so that the ice is not directly on your skin and the affected area.
Leaving the ice pack on for 20 minutes, a couple of times a day, can help reduce pain and swelling.
Taking an over-the-counter pain medication can help with pain relief in the short term. Taking an anti-inflammatory medicine before starting the infusion may be recommended, but you should always check with your medical provider first. Acetaminophen (Tylenol) is a first-line treatment for infusion site pain.
If your infusion site pain is persistent, ask your doctor whether any prescription medications could help with the pain. Doctors are often reluctant to prescribe opioids because they can slow breathing and even impair breathing at higher doses, but other medications may help with the pain.
“I recently started using Cymbalta,” shared one member of myPHteam. “I think it’s helping with the pain, but really too early to be sure.” Duloxetine, sold under the brand name Cymbalta, is an antidepressant of the selective serotonin and norepinephrine reuptake inhibitor (SSNRI) class sometimes prescribed to help manage pain.
If your infusion site pain is getting worse or making treatment too overwhelming, reach out for support. Your doctor is there to help make your quality of life as comfortable as possible and to work with you to determine the best treatment option.
One member reported switching from subcutaneous to intravenous (IV) treprostinil treatment because of their adverse reaction: “I was in hospital last week to have a Groshong catheter put in for Remodulin to go directly into my bloodstream. I couldn’t tolerate the skin issues, redness, swelling, and abscesses any longer from subcutaneous treatment. We’ll see if this works.”
Another wrote, “I have a PICC line, and I’m not having to do the ice and daily medication change anymore.”
If you have a central line for your medication, an infection at the infusion site is considered an emergency and may even be life-threatening. Let your health care team know immediately if you notice pain around the area, as well as redness, swelling, fever, or any liquid drainage.
If you have a continuous subcutaneous infusion, some redness and swelling are considered normal. However, drainage or fever should lead you to seek immediate medical attention.
A few factors can increase infusion site pain. Recent switching to a new infusion site can be a predictor of infusion-related pain. This is why it is not recommended to change infusion sites more often than necessary. Frequent switching of infusion sites can increase the likelihood of infusion-related pain, as the tissues surrounding the site may not have enough time to heal between insertions.
Your body’s pain response to an infusion site has to do with inflammation, vasodilation (the widening of blood vessels that decreases blood pressure), and pain stimulation.
Prostanoids, which include medications like Remodulin (treprostinil), Ventavis (iloprost), and Flolan (epoprostenol), may have both pro- and anti-inflammatory properties. These properties are likely all related to the common side effects of injection site pain, jaw pain, extremity pain, and headaches.
Every person is unique in their immune system, pain tolerance, and lifestyle factors, all of which can affect the body’s response to subcutaneous medicine infusions.
Infusion site pain is a common issue when treating PH and PAH. However, there are different techniques to lessen and manage pain at the infusion site. By following the tips mentioned in this article, you may be able to control your pain and continue your treatment plan. If you experience any discomfort or pain during treatment, remember to talk to your health care provider.
On myPHteam, the social network for people with pulmonary hypertension and their loved ones, more than 50,000 members come together to ask questions, give advice, and share their stories.
Are you treating pulmonary hypertension with infused prostaglandins? Do you have tips to share for ways to manage infusion site pain? Share your experience in the comments below, or start a conversation by posting on your Activities page.