Frequently asked questions

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.

Apply enough gel to cover the entire wound in a thin layer. Each tube covers about two 5×4-inch bandages, which is roughly the same surface area as a business-sized envelope.

Once the tube has been opened, apply the gel to all of your wounds and then immediately dispose of the tube in your household trash.

If the tube runs out during your dressing change, open a new tube and continue applying the gel until all wounds are fully covered.

Each tube of FILSUVEZ is meant for one-time use. Once the tube has been opened, the gel should be applied to all wounds, with the exception of mucous membranes (oral, intravaginal, or intra-anal) and the eyes. Once finished, the tube and any remaining gel should be immediately disposed of in your household trash.

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.

Your FILSUVEZ Starter Kit includes a range of tools and information to help you get started with treatment, along with support from a Chiesi Patient Education Liaison (PEL) and PantheRx Rare Pharmacy team. You can also click here 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.

PantheRx Rare Pharmacy is the specialty pharmacy that delivered your FILSUVEZ Starter Kit and will continue sending your monthly refills. Please do your best to answer calls from PantheRx Rare Pharmacy to receive important status updates and information about your treatment.

Your wound care–certified registered nurse at PantheRx Rare Pharmacy will check in with you during your first week of treatment and then quarterly after that. They can answer questions about how to apply FILSUVEZ, offer virtual counseling options, and provide EB resources and education. You will also have access to a Care Coordinator who will check in before each refill to monitor your progress and arrange delivery, and who can help answer questions about insurance, shipments, or your FILSUVEZ treatment experience. Your pharmacist is also available to answer medication questions and to contact your doctor if prescription changes or refills are needed.

Please contact PantheRx Rare Pharmacy directly with any questions about refills or prescription changes—your doctor will be contacted if adjustments are needed. You can also reach out to your Care Coordinator, wound care–certified registered nurse, or pharmacist from PantheRx Rare Pharmacy if you have questions, concerns, or changes to your care routine.

For questions or support, contact your PantheRx Rare Pharmacy team at 1-833-670-6464.

You may already be enrolled in Chiesi Total Care^SM, our comprehensive support program, which offers a range of services to help you along your treatment journey. Through this program, you can receive additional educational, financial,*^† and logistical support to help you stay consistent with your treatment. You will also be assigned a Chiesi Patient Education Liaison (PEL),^‡§ to support you throughout your treatment journey.

If you have consented to participate in Chiesi Total Care, you may be assigned a PEL—a wound care–certified registered nurse who is part of the Chiesi Total Care team. Your PEL provides disease education and one-on-one support beyond the doctor’s office. They will check in every 2 weeks for the first 3 months, then monthly, and can also help coordinate with PantheRx Rare Pharmacy as needed.

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.