When GVHD just won’t go away, ECP may be the answer

Posted March 6th, 2018 by Be The Match and filed in Donor Stories
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Jason, top center, transplant recipient

Extracorporeal photopheresis (ECP) is a potential treatment option for some transplant recipients with graft-versus-host disease (GVHD). It’s not a commonly known treatment and it’s more complicated and time-consuming than taking a pill. But it was the answer for Jason, a transplant recipient who endured several years of off-again, on-again bouts with chronic GVHD before ECP relieved his symptoms.

Jason’s experience with chronic GVHD

Jason says that he had anticipated getting GVHD after his transplant, and that he also tried to be mentally prepared for it. “But about 2 months into it I found out how GVHD drains you, takes your spirit away in a sense,” he recalls. “It really can affect your recovery.”

A few months after his transplant in 2011, Jason started to experience GVHD of the stomach and intestines. And then a few months after that, he noticed a red patch on his arm that his doctor confirmed was caused by chronic GVHD.

“So I started on prednisone and it worked,” he says. “But every time I tapered off the prednisone, the rash would come back on my arm, but also other places, my back and legs.”

That’s when he started asking whether ECP would be a good treatment option for him.

What is ECP, and who should be treated with it?

ECP uses light to damage the blood cells that cause GVHD. Dr. Laura Connelly-Smith, a hematologist at the University of Washington School of Medicine, describes ECP as “a procedure where an apheresis machine separates and removes some of the patient’s white blood cells. The collected cells are exposed to treatment with a drug and then “activated” by ultraviolet-A light (UVA) before being given back to the patient. This procedure is responsible for directly and indirectly damaging some of the T-cells that are responsible for causing the signs and symptoms of GVHD.”

ECP also helps “train” the recipient’s new immune system to become more tolerant, notes Dr. Connelly-Smith. “Unlike most other treatments for GVHD, we don’t think ECP will suppress, or hold back, the immune system. So, there is no evidence of increased risk of infection.”

“For people with GVHD, ECP is used when the GVHD doesn’t get better with high doses of steroid therapy,” says Dr. Connelly-Smith, who uses ECP to treat transplant recipients. Another use for ECP, she notes, is when patients like Jason can’t lower their steroid dose because their GVHD flares up.

Dr. Connelly-Smith also notes that ECP may be expensive. She recommends that you check to see if ECP is covered by your health insurance before you and your doctor decide to do ECP treatment.

In Jason’s case, his ECP treatments were every other week, 2 times per week, and his insurance company paid for the treatment.

More time-consuming than taking a pill

Jason’s experience with ECP treatment was typical. Each ECP session at the clinic would take 3-4 hours, most of the time spent lying in bed, and sessions were 2 times a week every other week.

“I maybe felt tired a little bit afterwards,” he says. “But I was able to continue to do things during the day.” Jason was working at the time, and so he scheduled ECP sessions really early in the day or late in the evening, which allowed him to work either before or after the treatments.

Not only is each ECP session time-consuming, but sometimes with chronic GVHD results may not be seen for 3 to 6 months. And Dr. Connelly-Smith notes that ECP is not helpful for everyone.

ECP success rates depend on what body parts are affected by GVHD, as well as the severity of the GVHD, she notes. Acute GVHD of the skin may get better in up to 8 out of 10 people, or up to 80% of cases, she says. For GVHD that affects the liver, stomach and intestines, it may not work quite as well. In these cases, according to Dr. Connelly-Smith, up to 6 out of 10 people, or up to 60%, will get better.

Progress after months of ECP

In Jason’s case, his doctor would re-evaluate his progress with ECP every 1-3 months. When Jason could taper off his prednisone while getting ECP without having his chronic GVHD symptoms flare up, he knew he had made real progress.

“ECP was a big part of me getting through this,” he says. But Jason also says that for him, both prednisone and ECP had a role to play in his recovery.

“For many people, prednisone works, and should be a part of the 1-2 year goal for recovery,” he says, while noting that ECP can be a huge part of a person’s recovery, too. “But ECP is a commitment,” he says. “If you’re committed to it, ECP may improve your quality of life.”

Questions to ask your doctor

It’s important to learn about your GVHD treatment options and ask your doctor questions. If you are considering ECP therapy, here are some questions you may want to ask:

  • Is ECP an option for me? Why or why not?
  • If I get ECP, when will we know if it’s working for me?
  • How much experience do you have using ECP to treat patients?
  • What are my options if ECP doesn’t work for me?

For more information about ECP, view our new fact sheet , developed jointly by Be The Match and the Chronic GVHD Consortium.

You can also contact the Be The Match Patient Support Center. Our BMT Patient Navigators can help you and your family get information and access resources and support. All of our programs and resources are free.

CALL: 1 (888) 999-6743

Monday through Friday, 8:00 a.m. – 5:00 p.m. Central Time

EMAIL: patientinfo@nmdp.org

3 Responses to “When GVHD just won’t go away, ECP may be the answer”

  1. Margie Benefico says:

    I would like more information on ECP and if possible to speak to a BMT patient who is or has gone through the treatment.

    Will be attending your conference in April in Denver, will the topic of ECP be discussed? If so in which session?

    Thanks so much for your help.

    • Bilan, Be The Match, Patient Navigator, Patient and Health Professional Services says:

      Thank you for contacting us Margie! Yes! Be The Match Patient Support Center will be at the Survivorship Symposium in Denver this April! Although ECP will not specifically be on the agenda, it may be discussed during the Chronic GVHD of the Skin session on Sunday at 11am. We’ll also have chronic GVHD fact sheets available for free at our booth. 6 of our 8 fact sheets are available on our website: https://bethematch.org/patients-and-families/life-after-transplant/physical-health-and-recovery/gvhd-treatment/.

      Absolutely! We could connect you to a peer volunteer who has had ECP through our Peer Connection volunteer program. You can call me at (888) 999-6743×7549 or access the request form here: https://bethematch.org/patients-and-families/support-for-you-and-your-family/peer-connect-program/.

      Please feel free to call or email us at patientinfo@nmdp.org.

      Thank you

  2. Lori says:

    I had an allogenic stem cell transplant 4 yrs ago. I have had gvhd of eyes, mouth, vagina, and skin. Schleraderma and tightness of ligaments in joints prevents me from standing steaight; hence I cannot stand or walk. I am in a wheelchair to get around. I have tried photopheresis for a year, Jacafi, Ibrutinab, and to no avail. The doctor wants to try Sirilimus along with mt Tacrolimus and Prednisone. But I am not on Sirolimus yet and feel pretty good. Any chance my body is tapering gvhd?

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