Frequently asked questions
Henry takes FILSUVEZ and is a paid ambassador for Chiesi. This is Henry’s personal experience, which may differ from yours. Please consult your healthcare provider.
- How to use FILSUVEZ
- Treatment Experience
and Expectations - Resources and Ongoing
Support
These questions are here to help you better understand FILSUVEZ and support ongoing conversations with your doctor
FILSUVEZ should be applied in a layer approximately 1 millimeter thick, about the thickness of a credit card, to all wounds at every dressing change, with the exception of mucous membranes (oral, intravaginal, or intra-anal) and the eyes. FILSUVEZ should be applied to the entire wound, side to side and end to end. Using more than the recommended amount may require additional rubbing during removal, increasing the risk of friction-related skin irritation or damage.
Click here to watch your wound care–certified registered nurse from PantheRx Rare Pharmacy demonstrate how to apply FILSUVEZ.
FILSUVEZ can be used alongside other wound care management,* giving you flexibility without disrupting your current wound care routine. There are no limitations for use†; you can apply as much as needed to cover all appropriate wounds at each application. However, be sure to discuss your treatment plan with your doctor.
FILSUVEZ has established safety and tolerability. In the clinical trial, the most common side effects reported were application site reactions like pain or itching.
Some people may have allergic or skin reactions (such as rash, hives, or redness/itching). If this happens, stop using it and contact your doctor immediately.
Click here to review detailed FILSUVEZ safety information.
FILSUVEZ is approved for use on all your wounds,* no matter where they are on your body.† It has been used on chronic wounds ranging in size and located on different areas of the body.
*FILSUVEZ is indicated for dystrophic or junctional EB wounds.†Do not use FILSUVEZ in or around the eyes or the mouth, vagina, or anus. If accidental contact does occur, immediately wash the area with clean water and contact your doctor if you have any discomfort.
In the EASE clinical trial, many patients experienced complete wound closure in approximately one and a half months (45 days). However, healing may take time. Continue with treatment as directed and talk with your doctor about expectations, even if you don’t see results right away.
Complete wound closure criteria: A target wound selected in advance had to be 100% closed by Day 45 for treatment to be considered successful. A wound was considered “completely closed” when the skin had fully healed over it and there was no fluid or drainage coming from the wound. Wounds that did not meet the definition of 100% closure by Day 45 were not counted in the primary end point for FILSUVEZ, even if there was noticeable healing.
You may find it helpful to take photos of your wounds along the way to track what wounds have been treated and closed, and areas that may have reopened so you can discuss your progress at your next appointment.
Consider what cadence might work for you—weekly or monthly. Always ensure to take the pictures at the same angle from the same distance to see your changes. Be sure to talk with your doctor about any updates or questions as you continue treatment.
Click here to see real treatment results from patients who used FILSUVEZ.
Bathing between dressing changes can help with cleansing, dressing removal, and infection control. If recommended by your doctor, gently cleanse your wounds during bathing to help loosen dressings and remove debris.
Click here to review the FILSUVEZ Instructions for Use and follow those steps along with your doctor’s guidance.
You may already be enrolled in Chiesi Total Care℠, our comprehensive support program designed to help you throughout your treatment journey. Through this program, you'll have access to a dedicated support team, including a Patient Services Manager (PSM)*† and a Patient Education Liaison (PEL)‡§. Chiesi Total Care also offers educational, financial,¶‖ and logistical support to help you stay consistent with your treatment.
If you have consented to participate in Chiesi Total Care, you will be assigned a PSM who serves as your primary point of contact for insurance, treatment access, and support services. Your PSM can answer questions about insurance coverage and treatment access, connect you with available support programs and resources, coordinate with your Patient Education Liaison (PEL)‡§ and Specialty Pharmacy, and help you get the support you need along the way.
For any questions throughout your treatment journey, start with your PSM.
If you have consented to participate in Chiesi Total Care, you may be assigned a PEL—a wound care–certified specialist who is part of the Chiesi Total Care team. Your PEL checks in every two weeks during the first three months of treatment, then follows up at a cadence that works best for you. PELs also provide education about EB and FILSUVEZ throughout your treatment journey and work closely with your Patient Services Manager (PSM)‡§ to help support your treatment experience.
When you begin treatment with FILSUVEZ, you'll have the option to enroll in Chiesi Total Care℠, a comprehensive support program designed to help throughout your FILSUVEZ journey. As part of Chiesi Total Care, you will be assigned a Patient Services Manager (PSM)*† who is your primary point of contact for help with insurance, treatment access, and support services. Your Patient Education Liaison (PEL)‡§ provides education and ongoing support throughout treatment. PantheRx Rare Pharmacy coordinates medication delivery and refills to help keep your treatment on track.
Your FILSUVEZ Starter Kit also includes a range of tools and information to help you get started with treatment. For additional educational resources, videos, and information about FILSUVEZ Friends, a mentorship program that connects patients and caregivers with others living with dystrophic or junctional EB, click here.
Yes, FILSUVEZ Friends is a mentorship program that connects people who are using FILSUVEZ, as well as caregivers supporting a loved one with dystrophic or junctional EB, with others who have similar experiences. Whether you have questions, want to share tips, or simply talk with another person who has gone through treatment, the program offers a way to find encouragement and build meaningful connections.
Click here to receive additional information and resources about FILSUVEZ.
